The birth of Setriakor: Epilogue

That first night home, I had my first proper night's sleep in a week, even though I slept lightly with Setri asleep in the bed next to me. Gam changed nappies and brought me water when I needed it. Looking after Setri at home was exactly as we had imagined. Except for the part where I cried every time I left him alone in our room. And every time I remembered the hospital stay. And every time I thought about putting him down. Gam would often be distressed to find me sitting on the couch with Setri in my arms and tears rolling down my cheeks for what seemed like no good reason at all.

After arriving home it took Setri another 36 hours of crying and discomfort to poo for the first time since his second day of life. The combination of nil-by-mouth and antibiotics had really messed with his digestive system. Another strike against the Special Care Registrars and their overly interventionist approach, as far as we were concerned.

Aside from that, everything appeared fine. From the minute we arrived home, Setri seemed infinitely more relaxed. He never had to scream for a feed because we were right there to see if he was hungry. He could be held whenever he needed it (which seemed to be all the time, but I didn't mind). We brought Setri back to the hospital at 6 days old for my Birth Centre follow-up, although I hated going back to the RBWH. Gam reassured me it was ok, we didn't have to stay there this time.



Karen, the midwife who delivered Setri, must have had an inkling of how we were feeling: she gave us brochures on how to complain. We had already taken some from the hospital, but we gratefully accepted these as a gesture of recognition that not all was right with our treatment there. Karen also gave us a disposable nappy- Setri had pooed when we arrived and we had changed his nappy. Problem was, we made the classic rookie mistake of only bringing one spare nappy. How many times could a baby poo during a half-hour visit, after all? However many spare nappies you have in your possession, plus one! He had put on weight though. I was so relieved, still fearful the hospital would find an excuse to take him back.

Gam told her how the registrar who came to my room on the second night had told me that she had been there at Setri's birth, that there was a lot of meconium in the waters and that he was 'in a bad way' and had vomited after the birth. Karen seemed shocked. Absolutely not, she told us. I had the lowest grade of meconium staining in my waters, and Setri was absolutely fine- as healthy as any baby could hope to be immediately after the birth. He had certainly not vomited. Karen asked me, a little apprehensively, if I had any issues with the care I had received through the Birth Centre. “No. You guys were fantastic”, I said without hesitation. Relieved, she gave me a hug and we said goodbye.

Four weeks after Setri's birth we had a group of friends over to breakfast at our house, the first time we had seen them since the birth. I tried to recount an abbreviated version of our stay in hospital to my friend Nicole. I thought enough time had passed that I would be able to at least manage that, but I started crying and couldn't finish.

We skipped an appointment that the Special Care Nursery had made for Setri with the doctor supposedly in charge of his care. Setri was healthy. If they were looking for reasons to justify his hospitalisation they wouldn't have found a single one. No way were we taking him back there.

Exactly 8 weeks after Setri's birth I noticed an increase in my bleeding, after it having previously nearly stopped. That night, around 9pm, I passed a couple of golf ball-sized clots. Risk of haemorrhage. I phoned the hospital and had my midwife on duty paged as per the instructions in my postnatal care information. Annie called back. I should go to the hospital right away, she said, detailing what I should look out for and the steps I should take if I started haemorrhaging. It sounded fairly straightforward, as long as I didn't haemorrhage. If that happened, it sounded like I would be dead before I reached the hospital. Chances were I just needed to be checked by a doctor, then I could go home. Actually, I'm not sure whether she said I could go home, or if that's what I told myself. I thanked Annie for her help. When I relayed the news to Gam my voice shook and I started to cry. “I have to go back to the hospital. I don't want to go back”.

Gam did his best to reassure me. I convinced myself that it was just a formality. The doctor would tell me I was ok and then we could go home.

The roads to the hospital were almost empty- it was a public holiday. We parked in the 'community vehicles' spot right out the front of the hospital. Inside, I had been instructed to go to the reception desk at the Birth Centre; from there I was directed to a waiting room that had obviously been closed for the night. It was locked, dark inside. There were no chairs outside, so I sat on the floor while Gam went back to the reception desk to ask where to go.

Eventually we were directed down a hallway past the Birth Suites in the regular maternity part of the hospital. I had walked down that hallway in labour, wrapped in a sheet, but my memory was hazy. “It was right about here that you had a contraction”, Gam said. I had hung onto the wooden handrail for support. “There were people looking at you, so I wrapped my arms around you and glared at them.”

We reached the small room we had been directed to. Setri needed a feed so I sat in a chair to feed him. The nurse arrived, then left while Setri finished feeding. Immediately afterward, he pooed, and it leaked out of his nappy and onto his jumpsuit. Ugh. Trust it to happen while we were out of the house. At least we were prepared this time: we had brought 2 spare nappies and a change of clothes. The nurse returned. Gam took Setri away to find changing room facilities. I was asked to lie on the bed by a nurse, who took down details of my problem bleeding. There were basically two possibilities: a postpartum infection or some retained placenta. I suspected the latter- when my midwife Karen put traction on Setri's umbilical cord after the birth, the placenta appeared to be torn. Karen had assured me it was all there, but the second she had pulled on the cord I felt it was wrong- she had stopped when I had asked and the placenta was expelled by my body a minute later- and now I felt that my fear at the time had been confirmed. I didn't say so. Instead I told her I hadn't passed any clots since 9pm and I was sure the bleeding was subsiding. I hadn't any symptoms of infection- no elevated temperature, no foul odour.

The nurse looked at the maternity pad I was wearing. It looked like a moderate amount of blood, she said, but I should go to the toilet and change my pad and also give her a urine sample while I was at it. The instructions were to wipe away all the blood with a sterile tissue she gave me, presumably to keep the sample clear of blood.

The toilet was quite a way down the corridor. In the end I just did the best I could to wipe away the blood. It just kept coming. I had awful trouble providing a urine sample, as I had made sure to visit the bathroom before we left for the hospital, but I managed what seemed like just enough. I changed my pad, flushed the toilet and pulled up my pants. As I started to walk away from the toilet I felt an odd, warm feeling between my legs, and knew I was about to pass another clot.

Shit. If they found out about this they would try to keep me in the hospital. I quickly pulled down my pants and hovered over the toilet seat as another dark red, golf-ball sized clot fell out of me. I knew that up to this point Gam was supportive of me deciding whether or not to stay overnight in the hospital, but this could well be the tipping point where he would be so worried for my safety that he would urge me to stay. I knew I was at risk of a haemorrhage but decided to lie and tell the nurse that the bleeding had subsided.

The nurse knocked on the bathroom door. I had been gone a while, was I ok? Just finishing up, I told her.

“You were gone a long time”, said Gam. “I had trouble peeing enough for the urine sample”, I said. Well, that was true. Setri had pooed again while I was gone, and Gam had changed him again.

The gynaecological registrar came by to examine me. She seemed to be favouring a diagnosis of infection rather than retained placenta. She wanted to keep me in hospital overnight, she said. I told her I was very keen to avoid it, if possible. How many women get a postpartum infection?, I asked. Something like 5 percent, she told me. She would be back soon. She wanted to do an internal examination. Not something I felt like, but it would have been silly to refuse. Registrar and nurse left the room together

“One more reason to never do this again.” said Gam. “What do you mean?”, I asked. “No. More. Kids. Look at all the things that have gone wrong”, he said. “First the Special Care Nursery, where I had to go home without you and Setri for almost a whole week, then the mastitis, and now some horrible infection where you might bleed to death at any minute. I'm getting the snip as soon as I can.”

I started crying. I knew that Gam wasn't likely to be keen on having more kids anyway, but it felt horrible that the misfortunes that had befallen us would influence his decision. Especially our experience with those bastard Special Care doctors meant that I might never have another baby as a result of Gam being traumatised by the experience. And the reference to the mastitis bothered me, because I felt like I was being blamed for something else that wasn't my fault. As for tonight's events, I knew where Gam was coming from. It had crossed his mind that I could die. To him, nothing was worth that, not even Setri, let alone risking something like this again- possibly with worse consequences- for some non-existent future baby. At the same time, I almost felt that I was being punished for it if it factored into Gam refusing something I wanted. No way was that his intention, I knew, but it still hurt. Besides, could there possibly be a worse time to bring this up? I sniffed and wiped away tears.

Gam seemed surprised and ever-so-slightly irritated that I had suddenly gotten so emotional, but also appeared to realise that perhaps this wasn't the best time to talk about ruling out more kids. He apologised and handed me some tissues.

The nurse returned. I quizzed her on the likelihood of infection, puzzled that the doctor seemed to think it the most likely diagnosis. How many infections presented with no temperature? No foul-smelling discharge? Almost none, she told me. Pressed for a figure, she said 99.9% would have one or both symptoms. I had neither. I was relieved.

The registrar returned to conduct an internal examination. She explained that it would be just like a pap smear, she would use a speculum and take some swabs from around my cervix, plus take a look at it with a little light. It might be a bit uncomfortable, she said.

Although the clear plastic speculum was lubricated with some kind of gel, it was quite uncomfortable when inserted. I gritted my teeth for the swabs but they weren't too bad. Then the registrar said “There's another clot working its way out through the cervix. Let me just...”. And with that, she inserted a crochet-hook-like implement into my vagina and, after a moment's work, hauled out another clot, which the nurse promptly wiped away. A concerned look crossed the doctor's face. “I'd keep you in”, she said.

Why did there have to be another clot? How many more would there be? Just how much risk was there if I refused to stay? On the one hand I wanted to avoid the hospital at almost any cost. On the other hand, I had only been Setri's mother for 8 weeks, and I didn't want to die now. I wanted to be his mother for a lot longer. At least until he could remember me, and know how much I loved him. And Gam. I pictured Gam raising Setri on his own, and felt distraught. I would rather stay in the hospital than have that happen. On the other hand, if I stayed in the hospital they might take Setri away again? What if another midwife decided that he was breathing too fast and the whole thing happened again? Panicking internally at the thought, I asked what the risk was of a haemorrhage.

Without answering my question directly, the registrar stated how quickly a woman can bleed out during a postpartum haemorrhage. Often too quickly for an ambulance to arrive. “8 weeks is pretty much exactly the time that we'd expect to see problems”, she told me. “I'd rather have you in the hospital where if something goes wrong we can get you help quickly. You can have your baby right with you in the room”, she said. Experience told me better than to believe that. She didn't know what could go wrong- I did. The memory of escaping from hospital with Setri was still fresh. I looked desperately at Gam, whose gaze told me that he knew exactly what I was thinking, and the same thing had gone through his mind. I'd need an ultrasound to determine whether there were any pieces of retained placenta, she said. If I stayed overnight, as an inpatient I would have priority in the queue and could have that ultrasound in the morning. If I went home, I would have to return to the hospital the next day and have the ultrasound as an outpatient, and likely have to wait several hours for it.

That made no sense. If I was really at risk of bleeding to death, shouldn't the degree of seriousness of my condition dictate my position in the queue, not whether I was a damn inpatient? I was being asked to spend a night in hospital, risking going through again what we had been put through after Setri's birth, to avoid a few hours waiting in line for an ultrasound the next day? That sealed my decision. I wanted to go home.

There was only a very small risk I would die, I told myself. I didn't feel particularly reassured.

The registrar looked unhappy. I would have to sign some forms, she told me. I was going to be discharging myself against medical advice. Was I sure?

I wanted to be safe. I wanted to stay, just in case the worst happened. I wasn't delusional. I knew the worst thing that could happen was that I might die. That was far worse than one more night away from Gam. Worse even than Setri being taken away again. But the risk of haemorrhage, despite being greatly increased, seemed smaller than the risk of suffering another night away from Gam. Another night of harassment, another night where someone might decide that Setri's breathing was a little funny, where I would be relentlessly pestered to give him up to the Special Care Nursery for 'observation'. I had failed Setri once and released him to those people, and look what happened. I didn't trust myself not to let it happen again. I probably wasn't going to bleed out at home, I told myself. It was a horrific thought, but the risk was actually very small. They were just being careful, that's all.

I signed the forms, the same forms we had insisted we had wanted to sign to get Setri out of hospital when there was absolutely nothing wrong with him. Gam and I marvelled at how hard we had had to fight to get Setri discharged, yet here I was with a condition that made both of us fearful for my survival, and the forms were handed over with no fuss at all.

I gave them to the nurse. She then went over some symptoms I should look out for. When we should jump into the car and hurry to the hospital; when we should call an ambulance. She seemed genuinely worried about me, surprisingly so. It did give me pause for thought. I knew my decision was questionable, I just hoped I wasn't one of the unlucky ones.

In the car on the way home, in the dark, I quietly shed a few tears, hoping Gam wouldn't notice. I was afraid of not making it through the night. I could tell Gam was deeply worried too. Setri slept.

Back home, Gam left the car and the garage unlocked, in case he had to get me to hospital in a hurry. We would go to the Mater if something happened, he said, he could get there quicker than if we had to wait for an ambulance.

I did wake up the next day. We waited 5 hours at the hospital for an ultrasound. A few days later I received a phonecall letting me know that the results, as well as those of the blood tests, were clear. No infection, and no retained placenta. It was likely that there had been some pieces of the placenta retained but the clots I passed had been the last of it.

We weren't tested like that again, but it was another month or so before I attempted to recount even an abbreviated version of our hospital stay to another person. By that time I could put Setri down on his own without recalling our forced separation and crying.

The raw trauma faded but I was, and am, still angry. The first 5 days of Setri's life were stolen from him, and from us. Not for a legitimate reason. It was not just that no-one listened. It was not just the unprofessional behaviour, the harassment, disrespect and unwarranted, illegitimate threats from registrars on that second, awful night in hospital. It was not just the fact that medical interventions were conducted on Setri without our knowledge or our consent. Not just the fact that they put him nil-by-mouth without a good medical reason for doing so, depriving him of crucial colostrum in those first early days of life. Not just the way they completely failed to provide me with breastfeeding support just as my milk was coming in. Not just the way we were blackmailed into agreeing to a nasogastric tube when it was implied that Setri was becoming malnourished and it would be our fault if his health were affected. Not just the fact that if they had managed to do that, Setri would undoubtedly have been made a lot sicker and hospitalised a lot longer thanks to their stupid, medically unnecessary intervention. Not just any one of those things, which I think on their own would be plenty to get angry about. All of it. I'm angry about all of it. I think about all I have to be grateful for, and it's a heck of a lot. For 5 days we were living cheek by jowl with people whose lives would be changed for the worse to an unimaginable degree, helped through the experience by the same doctors who had caused us so much trouble. But that doesn't take away from the fact that what happened to us was wrong, and it was someone's fault, and it could have been prevented.

I'm reading over this on the eve of Setri's first birthday. I wrote the last parts of Setri's birth story 6 months ago. I had thought a lot of the stronger emotions I had about this experience had faded, and I suppose to a degree they have. But when I started preparing for my return to work, and had to attend a course at UQ Library's Herston branch, I was reminded of the only other time I had been to the library, which was at the same time I first encountered the Special Care Nursery. I was pregnant at the time and never once imagined that I would be there again in a non-professional context. Just the prospect of having to go to that library, had me feeling anxious and sick all week leading up to the course. I was relieved when I saw didn't have to walk past the front door of the Ned Hanlon building after getting off the bus.

We always intended to send off an official complaint about our experience, and we've had it ready to go for months without actually getting around to sending it. Gam is sending it off tonight. I just want to get this all out there and off my chest before Setri's first birthday tomorrow so I can let it be Setri's day, the anniversary of the arrival of our beautiful little guy, instead of the anniversary of a time that was supposed to be joyous but was instead turned into a horrible experience. We don't get to have that time over again.
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The birth of Setriakor: day 6.

In the morning we packed up our things so we could be ready to leave as soon as we had arranged Setri's discharge. As had become practice, we discussed strategy in case roadblocks were again thrown in our way.

We stayed in the Special Care Nursery from an early hour after asking to see a doctor. We expected to have to fight for an early discharge against medical advice. Instead we were informed by a nurse that she would be arranging discharge and that after being seen by the registrar on duty and being given his hearing check, we would be on our way. “Huh. Well that can only be a good thing,” I said to Gam.

Setri had a feed and we waited. People came and went; the doctors did their morning rounds in a whirl, spending all of about 10 seconds in the nursery, apparently without so much of a glance at Setri. It wouldn't have surprised us to learn that that was the full extent of the attention they paid to him throughout his stay, such was the magnitude of their mistake in keeping him in Special Care for 5 nights.

A blood test nurse came by. One more heel prick test to ensure Setri's jaundice was subsiding, she said. It seemed pretty obvious that it was, especially since he had been tested 2 days prior and we were told bilirubin levels were within normal range, and his minimal jaundice had only diminished since he started feeding again. After the ordeal of the last tests, where one nurse had had to hold Setri down in the isolette to stop him from army-crawling away while another nurse tried repeatedly to get blood from his heel, Setri screaming all the while, we feared the worst. This nurse surprised us by taking her time. She swapped the newborn heelprick needle for a larger one more suited to Setri's enormous size and spent a number of minutes patiently squeezing tiny drop after tiny drop from Setri's reluctant heel. Setri was uncomfortable but not traumatised, and we were grateful.

The hearing test nurse stopped by with a trolley. My stomach twisted itself in knots. She was wearing a cheery purple shirt and not her midwife's uniform, but I recognised her instantly as the midwife who had caused me so much trouble on my second night in hospital, bringing the registrars who had alternately confused me with another patient, treated me scornfully and threatened to remove Setri from my care. She stopped to announce her presence to the nurse on duty and I pointed her out to Gam. “That's the one”. “Are you alright?”, he asked. I didn't feel alright. I felt sick and scared all over again. “I'll be ok, I said.”

She recognised me too. She greeted me cheerfully, but it was obvious that there was some strain. I was there because of her. Setri was there because of her. Setri fed, was quiet and passed the test. She told us about her sons. Don't believe anyone who tells you that boys are trouble, she said. Hers were good boys who had never caused her any trouble. Trying to find common ground. “I hope you don't hold anything against me for the other night”, she said before she left. “I hope you don't hold anything against me”. I did. I couldn't help it. I was swelling with resentment. If it hadn't been for her, I could have gone home. At the same time I knew she had been acting on legitimate concerns and followed them up appropriately, if somewhat overzealously. It was the doctors who were responsible for keeping us there, not her. I shook my head. “You were just doing your job”.

We waited some more.

The registrar- a fit, good-looking Scandinavian import whose appearance made me feel even more conscious of my bloated, pale body, dark under-eye circles and unkempt appearance- came by while Setri was having a feed. Oh she couldn't possibly do the requisite checks now, she said, he would get too agitated. She would come back shortly.

We waited. A couple of hours passed. We didn't dare leave in case the registrar came back. We took turns going to the bathroom. We grew impatient. We chatted with the nice nurses on duty. One- it was her first day in Special Care- was a lactation consultant. I wondered what she would have made of the registrars arbitrarily placing Setri nil-by-mouth and then failing to give me any breastfeeding support. She offered advice if I needed it, but noted that Setri was feeding well.

Gam changed Setri's wet nappy. Setri still hadn't pooed. We felt safe enough with the nurse on duty to ask: When should we be worried? It had been 3 days. If he hadn't pooed within 48 hours, she said, bring him back to hospital. Not to this one, Gam muttered to me. Setri was never coming back to Special Care.

How long until Setri's bellybutton stump fell off?, we asked the nurse. It looked pretty dried out to us. “Oh probably another 5 days at least,” she said. 10 minutes later, the stump and its plastic clip fell off. We showed the surprised nurse. I told Gam that I had read that some people keep it as a memento, along with keepsakes such as a lock of the baby's hair, or first teeth. We agreed that was pretty gross, but neither of us could make the first move to throw out the stump. Gam stowed it in my bag, as we joked that we'd probably find it in a few months' time being batted around by one of the cats, covered in lint.

More time passed. We grew annoyed. It was now after lunch time. Neither of us had even had breakfast, let alone lunch. Even my 'comfortable' chair was now causing me pain, but I didn't yet have the strength for taking walks just to stretch my legs. Gam went looking for the registrar but couldn't find her. I overheard the nurses talking about how full the Special Care Nursery now was. Was that why Setri was being discharged? It was Saturday- as far as we had been informed, he was supposed to be released on Monday. No-one had given us a reason for the sudden change of plans, and we didn't dare ask in case we somehow jinxed things. The symptom for which he had been hospitalised, the fast breathing, was still present. Somehow they had abandoned the idea that he was about to drop dead, without explaining why they had suddenly changed their minds.

Eventually the registrar came back. Setri was still breathing somewhat fast but passed all the health checks except one. The registrar couldn't find a pulse in his femoral artery. She tried and she tried, and still couldn't find one. Was it really necessary? We asked. Clearly he had a pulse- he was alive, wasn't he? She was insistent that it had to be done. She went away, came back. Gam and I gritted our teeth After 20 minutes she finally found the pulse she was looking for and we were free to go, just like that.

“I have been inside this building for nearly a week”, I said to Gam as we approached the front door of the hospital building. “And I had to go out this door every night without you and Setri”, he said. I tried to imagine what that must have felt like. How on earth could things have gone so wrong when a perfect birth had produced such a healthy baby?

Outside, I blinked in the bright sunlight. The weather had turned from unseasonably warm remnants of summer when I went into labour to cold Autumn while I was inside, and I hadn't packed a jacket. I felt I'd had a taste of what it was like to be released from prison.

The birth of Setriakor: Day 5

Gam arrived early. I was feeding Setri again, and he came straight to Special Care. We wanted to speak to the doctors as early as possible and get underway our plan to discharge Setri against medical advice. We knew now that the doctors would make it as difficult as possible and it would likely take until the afternoon before we could take Setri home.

Gam was worried as to how I was holding up, having been woken every 2 hours to feed Setri. He was not to worry, I told him, I was feeling wonderful. He had stood up for me, he had fought for Setri, and Setri had spent the night getting cuddles and the breast milk he needed every 2 hours. I was still on cloud nine.

Gam was not so well-off, having again barely slept. He was looking fairly haggard. I was glad today was to be our last day. We put word in early that we wanted to speak to the registrar on duty about discharging Setri. We had no plan to wait for any damn meeting, rounds by the doctors or any other nonsense.

After feeding Setri we headed out of Special Care and ran into the young aboriginal couple whose tiny, pom-pom haired daughter was also in Special Care. We exchanged greetings. They were here rather early, Gam mentioned. Yes, the young guy affirmed. They were no longer staying with an Auntie 40 minutes away from the hospital, they were staying in a special room at the hospital. It was really good, he said, their daughter stayed in the room with them and the hospital was just making sure that their daughter continued to put on weight for a couple of days in their care and they would be allowed to go home.

How did they get this room?, Gam asked. The young guy wasn't sure. Someone approached them, he said. If you wanted to stay there otherwise you had to apply. It usually took a couple of days, as far as he was aware. Never mind, said Gam, it sounded good but we were planning on getting out of there sooner than that. We said our goodbyes. Why hadn't anyone told us about this option, we wondered, so we could be together? I was alone. Gam was spending nights home alone on the couch, too upset to sleep in our bedroom. Setri was in Special Care, clearly stressed by the separation, and Gam was driving anywhere from 20-40 minutes each way from the hospital depending on the time of day, and spending $24 a day on parking. More any time he went home to cook and bring me a decent dinner. Setri wasn't sick, he could easily have been in a room with us and checked up on by the hospital staff if they were so damn worried, still convinced his life was in danger. To say we felt a bit miffed would be to greatly understate things.

The friendly, red-haired registrar from the day before stopped by my ward to see us. Before we could tell her that we wanted Setri out of there, she made an announcement. She had a proposal, she said. They were still no closer to a diagnosis and Setri's breathing was still a little high- in the 70s rather than the 40-60 per minute considered normal. They wanted to keep Setri in hospital. We knew that, and didn't care what they wanted. But we let her speak her piece.

Rather than have me stay in the ward, there was a special room right next to Special Care, she told us- that must be the unit we had just learned about!

I would be allowed to stay there for one night, and then Gam could join me the next night. That way, rather than having to walk the long walk from the gynaecology ward to Special Care every 2 hours at night, I would have to walk only a short distance down the corridor. They would call me every 2 hours or when Setri woke for a feed. On the second night, with Gam staying there, the same thing would happen. On the third night Setri could stay in the room with us and staff would check up on him. This might occur on the second night if all went well. The maximum number of nights we could stay in the unit was three. On Monday- one full week after Setri's birth- we would be discharged. Was that acceptable to us?

Gam and I looked at each other. We had finally been given a discharge date. We knew Setri didn't need to be in hospital and we didn't want or intend for him and me to be there until Monday. However, this was a way out without conflict, without looking like we were doing the wrong thing, going against doctors' orders. A way out without looking like the bad parents we had been painted by some of the registrars to be. We agreed without hesitation.

The registrar would sort it out then, she told us. We were to see a certain nurse in charge of admissions to that unit in the afternoon; meanwhile she would arrange my discharge from Maternity this very morning.

As soon as she had left, Gam and I both said what we had been thinking. First, there was no way we would stay for 2 more nights. One night in the unit would provide a path to exit that met the Special Care registrars halfway. We could handle that. Secondly, although we were very happy about this turn of events we both had a couple of questions in mind- why on earth would I have to stay there on my own the first night? Why would we have to be separated for yet another night when the room was equipped for couples? That seemed arbitrary and cruel after everything we had been through. As for us staying together with Setri in the unit for one more night, if they weren't going to be monitoring him overnight, what was the aim of it? It seemed as if they were trying to test us, to see if I was capable of looking after Setri on my own. What was going to stop Gam staying there with me anyway? Surely they weren't going to police visitors for that room like they did for the wards? And why 3 nights? After all, Setri had been in hospital for 4 nights without dying, they still hadn't come up with a diagnosis. What made them think something was likely enough to happen in the next 2 nights that they had to keep him in hospital?

“You should just stay with me in the unit tonight regardless”, I told Gam. We messaged Mum and Dad to let them know we wouldn't be coming home today after all and to visit us at the hospital.

I was eating homemade porridge that Gam brought in for me when the discharge nurse arrived to see me. She saw I was eating and said she would come back shortly. Mum and Dad arrived in good spirits. We told them what was happening and that we would only be there for one more night. Both Gam and I hid our feelings of trepidation at saying out loud that we would be there only one more night. We had said it so many times since Setri was born, and each time events had conspired to keep us there.

Something I withheld even from Gam was that I was starting to feel institutionalised. I had not left the building even once since I arrived 5 days ago. It was bad enough to leave Setri and go to another part of the building to eat, sleep or go to the toilet. It hadn't occurred to me to step outside, not without Setri. I was becoming afraid of going home. It was a stupid fear, I knew it, and I worried it would upset Gam. But I still didn't really know how to look after a baby. 4 days had passed in which I was not allowed by the hospital to learn how to care for my baby. Setri was 4 days old and I still didn't really even know how to change a nappy. Here, the cleaning was done every day. The food was shit, but it arrived at the same time every day. If my sheets needed changing they would be changed. It was nonsense, of course. I wasn't happy, and I wasn't comfortable. I was horribly sleep-deprived. Anything I needed at home, Gam would provide. But we weren't a smooth-running machine like the hospital. As clinical, unreasonable, inhuman as the treatment of Setri and I had been, it was predictable, familiar. Somehow I was becoming afraid to leave. It was an odd feeling.

The discharge nurse came back as I finished my porridge. After making sure I didn't mind her conducting the requisite health checks in their presence, I lay on the bed while she palpated my mushy-feeling abdomen to check that my uterus was shrinking properly, and asked about bleeding and pain. Everything checked out, I signed my discharge forms and we carried our bags down to the Special Care Nursery level. It was still too early to check in there, so after leaving them outside the unit we all went again to visit Setri, familiar now with the pathetic rigmarole of having to take turns for one of us stand outside the nursery in the hallway because even a baby's own mother and father counted as visitors. It still grated on me that this was just one more thing we never would have had to do if the hospital had done the right thing and allowed us to take Setri home. I was seething with resentment, yet still anxious that they would find a way to prevent us from taking him home.

One thing that still worried us was that Setri had lost so much weight. Of course this was due to the fact that the registrar had arbitrarily placed him on nil-by-mouth for over 36 hours before we had the guts to feed him against their orders, but they weren't about to take that into account. A Special Care nurse informed us that if he lost more than 10% of his body weight it was policy to keep him in hospital. Even though it was the fault of the doctors that he'd lost so much weight in the first place, Gam and I said to each other. The nurse reassured us that she had weighed him and he had 'only' lost about 8% of his body weight. It would start to pick up now that he was feeding again, she said kindly. He now weighed under 5kg, 440g down from his birth weight.

Setri was still feeding with great vigour; those damn wires attached to him notwithstanding. The cannula in his hand had caused him great irritation from the start, but it was my mum, a former nurse, who first noticed that something had gone wrong.

“His hand looks a bit swollen”, she said. It did. He also seemed uncomfortable when it was touched. “I think the cannula's come out”, Mum said, “See that redness further up his arm?”. We flagged down the nurse, who removed the dressing that held the cannula in place. It was horrible- Setri's arm and hand were swollen and bright red, obviously sore and sensitive, judging by Setri's reaction to having it handled. It wasn't an infection, but the cannula site had blocked up and the glucose drip that they had not taken out in spite of the fact that Setri was now breastfeeding again had been feeding into his arm rather than a vein. “That's pretty red,” said Mum. “Looks like it's been like that for a while.”

The nurse bustled about, removing the cannula and dressing from Setri's arm. From what she told us, it wasn't a surprise that this had occurred. The cannula site was getting old. They had flushed it early that morning, the doctors wanting to keep the site open (god knows why- this made us mad. What else did those people have in store for him?) but not wanting to recannulate him at a new site for the obvious reason that he was now no longer nil-by-mouth and didn't really need it. “We want this out, we do not want him recannulated,” Gam said, noting that it had been done the first time around without our permission. Chances were he didn't need to say it- they probably would not have recannulated Setri, but who could blame him for feeling the need to iterate it so strongly, after everything that had happened?

“One more thing that wouldn't have happened but for the Special Care Nursery”, I said bitterly, upset all over again as I looked at Setri's little arm, swollen and red. “This is an actual injury”, said Gam. It looked painful. We were angry. None of this should have happened. None of it. We shouldn't have been there. We were effectively forced into this situation and now our baby was in pain once again as a result of unnecessary medical intervention. On its own it might have seemed minor, but to us it was just the latest in a long string of insults. At least he had his preferred sucking hand back- the dressing and the cannula had prevented him from self-soothing in his preferred manner, part of the reason it had appeared to annoy him so much in the first place.

“Don't worry, we'll get you out of this place soon”, Gam said to Setri.

It was around this time that one of the nurses enquired about Setri's bowel movements during the short time he had spent outside the Special Care Nursery. “Normal”, I told her. He had pooed meconium on his second night in hospital while in the maternity ward with me, and had pooed at least once prior to that on his first day in Special Care. Why? Setri hadn't passed a bowel movement since being put nil-by-mouth when he was less than 2 days old, she told us. That was normal, given his treatment, but it was something they had to monitor. If he didn't poo soon it could indicate trouble. If he didn't poo, would it mean they would keep him in hospital?, we asked. It could, she said. “Great”, said Gam. “One more thing to worry about.” One more potential health problem that was the fault of the hospital. The registrar had placed Setri nil-by-mouth when he was only 1 day old, and it was 36 hours before we told them to go to hell and fed him anyway. That meant he missed most of the colostrum I produced- colostrum designed to clear out his gastrointestinal tract. One more reason to be angry.

It was not long after lunch time when we moved our stuff into the special parents' unit. It was set up like a cheap motel room and had a double bed. No reassuringly sterile hospital linens here, though- the bedclothes looked worn and had seen better days. The room was clean enough, but still a bit scungy. Quite a lot scungy compared with the hospital environment I'd become used to, really. There was a folding change-table for parents whose babies were allowed to stay with them. It looked dangerously flimsy.

Even worse was the bathroom. It was a shared bathroom, with a door on either side leading from both the parents' units, and a special locking system explained to us by the admitting nurse. Sharing wasn't the problem. I'd been sharing a bathroom with at least one person right from the very beginning. The bathroom was dirty. As in it hadn't had more than a perfunctory cleaning in a long time. The toilet-roll holder had been pulled away from the wall and the roll dangled ready to fall on the floor. There were handrails right next to the toilet, which I had found essential for support up to that point, but their less-than-clean appearance meant I just took extra care getting up and down rather than touch them. I did my best to wash my hands extra thoroughly. The unsavoury state of the unit did have one positive, if unintended, effect: I suddenly lost all apprehension about going back home! No matter how incapable Gam and I were of keeping on top of the housework, it would take a long time for our bathroom to get that dirty!

Meals were still delivered, but only for me. We weren't sure if Gam was officially staying in the unit or not. He had been there when we checked in, and no-one mentioned that it was only supposed to be me staying there. Not that it mattered, as the meals were just as inedible. The only difference was that I was offered a 'menu' and could elect to receive full-fat milk in the mornings rather than the skim milk that had been provided while I was staying in Maternity.

For the first time in 5 nights, Gam and I spent the night together. It was the first time in many months that I had been able to spoon him in bed, now that my massive, uncomfortable pregnant stomach had disappeared. It felt blissful to hold him.

Not so blissful was being woken every 2 hours on the dot by a phonecall from Special Care, hauling on a few more items of clothing and trotting down the hallway to feed Setri. 5 days in and we were both severely sleep-deprived to the point where it felt literally painful to drag ourselves from slumber. Gam almost succumbed to the temptation of staying in bed at one point, but doggedly roused himself and followed me to the nursery before falling asleep in his chair as I fed Setri. It was ridiculous, we grumbled on the way back to our room. At home we'd have Setri in our room, in the co-sleeper cot attached to our bed. We were being sleep-deprived for nothing other than the satisfaction of the hospital. No way were we going to do this for another night, even if Setri was allowed to stay in the parents' unit with us. Having Gam with me, us being a team again through the night as well as the day, a family tucked into the corner of the Special Care Nursery, Setri falling asleep in Gam's arms as he held him after a feed, it felt almost right. But we were still in the hospital, and we ached with tiredness and the desire to go home.

The birth of Setriakor: Day 4

At 6am I awoke and showered, then expressed again, sitting my specimen jar on my breakfast tray. I filled that jar with colostrum and went to the ward reception for some labels before returning and starting on a second jar.

Gam arrived and I showered. My milk was coming in- my boobs were visibly larger than they had been the night before. And sore. To my relief, my belly had also shrunk some more; the day after the birth I looked like a woman who was 6 months pregnant. Now I looked... maybe 3 or 4 months pregnant. After my shower the new midwife on duty stopped by, asking about my bleeding, whether I needed any pain relief, and whether I'd managed to 'move my bowels' since the birth.

I hadn't, I told her. Was there something I could take that would help? She offered Metamucil, a laxative tablet or Microlax. Microlax sounded the most appropriate- my fibre intake was fine and I didn't anticipate any problems once I had successfully been to the toilet for the first time. When the midwife returned she handed me the little bottle of Microlax and instructed me on how to use it: lubricate nozzle with the little sachet of lube, insert nozzle up bottom, squeeze bottle, then wait in proximity to bathroom because the urge to poo will hit suddenly!

In the bathroom, having followed the instructions I discovered that the Microlax seemed to act basically as an irritant, and had the urge to expel it straight away- it burned! I tried to hold on until it seemed to be working properly, then I had an urge to push, disconcertingly like those I experienced during labour. Soon I had my relief, with no ill-effects for my poor bruised pelvic floor. The experience pretty much confirmed that my inability to 'go' had been psychological and when the midwife came around again I told her as much. “That's pretty common!”, she laughed.

That midwife took an interest in us and took time to talk to us- and listen to our story so far. Aspects of it clearly concerned her, though we had not told her anything beyond the first doctor's inappropriate inquiry about vaccinations, omitting the patient-confusion episode and the second doctor's implied threat to remove Setri from our custody. Mostly because I found hard enough to get the rest out without my voice breaking without having to address the most traumatic aspects of what happened the night before.

Gam and I went again to Special Care. We were the parents of 'the big baby'. It was now over 24 hours since either of us had been allowed to hold Setri. One of the nurses was just finishing her shift. “He was just distraught last night”, she told us. “He just wouldn't settle, so I got him out for a little cuddle”. No surprises, Setri had settled really well after that. “Thank you”, I said to the nurse. I felt sick. I was torn between a feeling of extreme gratitude that Setri had had some human contact, which he so clearly needed, and a sheer seething hatred of everyone in the nursery who had conspire to stop me from holding him in my arms. That wasn't the nurses fault, I thought. But why hadn't they called me if he needed a cuddle? I hadn't been allowed to hold him for more than 24 hours. Why hadn't the nurse called me to settle Setri? My heart broke, but I settled on being thankful that at least Setri had had a cuddle from someone. That, more than anything, was what he needed. Not the drip, not the wires, not the isolette.


It seemed as if the nursery now had some inkling of how disgruntled we were- maybe word was starting to get around- as they had arranged for some middle-aged head nurse to speak to us about how important it was that Setri continue to be nil-by-mouth. Unlike the other nurses actually working in the nursery, she seemed to be a direct mouthpiece for the doctors. They wanted to put in a nasogastric tube to feed him.

They wanted to what?

No way, Gam and I said. Setri should be allowed to breastfeed. He had been breastfeeding fine before being admitted to Special Care. If they were going to assert that he couldn't tolerate a feed, then they should conduct a trial feed to see if that was actually true. Let us feed him here, we argued, while he's hooked up to the monitor, and see for yourselves whether his oxygen saturation drops while he's feeding.

No, the nurse said. “We don't know how he'll tolerate a feed”. He could tolerate a feed, we again replied, wondering how many times we had to say that he was feeding fine before they took him. He had been feeding well, he had been making a normal number of wet nappies and he had pooed.

“Yes, but we don't know how much he'll be getting,” she said. That was easy, we replied. There are numerous ways to determine that, from weighing an infant before and after a feed, to feeding them the expressed milk in a bottle and measuring the volume taken.

“We don't know how he'll tolerate a feed”, the nurse said again. Was I imagining things, or didn't we just go over this?, I wondered. Gam and I repeated what we had said earlier- that Setri had been feeding just fine until someone decided that he wasn't allowed to. Again she ignored this fact, repeating that if he were allowed to breastfeed there was no way to determine how much milk he was getting. Trying to fob us off with a completely circular argument.


Then Gam asked about getting Setri out of the isolette and into a crib so we could have more contact with him. No, the nurse said, he couldn't cope with the crib, it was important that he remain in the isolette. I blinked incredulously, barely holding it together. What I had dismissed as paranoia was coming true: I had been offered the choice of crib or isolette and chosen the isolette because it was logistically easier for the nursery; now it was being used as 'evidence' that Setri was sick. Gam told the nurse we wanted to speak to the registrar. We would have to wait, we were told. After the head nurse left, one of the junior nurses tried to reassure us: nurse such-and-such was actually very pro-breastfeeding, it was just that she was worried for Setri's safety.

Gam and I conferred in hushed tones. I had been offered the choice of isolette or crib when Setri was admitted to the nursery, I reiterated to Gam. I had told him this the day before, when recounting the story of Setri's admission. Gam hadn't dismissed it as paranoia, telling me that we'd been through enough crap to justify the thought that someone might try and pull a trick like that. He was right.

Morning was the busiest period in the nursery and the place was getting full; opposite us were the family of a woman who'd given birth to twins, a boy and a girl. The little girl had just been placed in the isolette across from Setri's. The boy had died during the birth, prompting a poorly-handled exchange between the distraught sister of the mother, who had been present at the emergency caesarean birth, and the middle-aged matron- the smoker- who Gam and I had taken a dislike to. The aunt had come by Special Care to find out where her nephew's body was being kept - “looking for my nephew”, she said- and the nurse hadn't paid enough attention to realise that the naked little girl in the isolette in front of her was not a baby boy. The aunt angrily blurted out what had happened, and cursed the nurse for her mistake. The nurse was brusque and insensitive, verging on rude, in her reply. Sure, she couldn't have known that the newly admitted little girl had a dead twin, but someone with her experience should have known how to defuse the situation arising from her mistake. An apology would have been a good start. There was considerable irony in that Gam and I had just heard her talking to another nurse about being sent to a seminar designed to improve 'customer service' at the hospital. Next to them was the family of one of the tiny premie babies: the mother, who came in every day, twice a day to use the electric breast pump and have skin-to-skin contact with her little girl, and her parents; the grandparents who took turns proudly holding the baby, who was smaller than most dolls. Even the nurses marvelled at her size every time they retrieved her from the isolette for the mother. We weren't going to kick up a fuss and potentially distress other visitors even if we felt like it. But we were going to stand up for Setri, and stand up for ourselves. At least, that's what we told ourselves we would do.

No way were we going to consent to a nasogastric tube, Gam and I agreed. We were positively agog that it had come to this: a healthy baby with a history of uncomplicated breastfeeding had first been deprived of the breast and placed on a glucose drip; now they were about to start tube-feeding him on the premise that he couldn't possibly tolerate a breastfeed. It was impossible to believe that the people we were dealing with were medical professionals. Putting a nasogastric tube in Setri wasn't best practice, it wasn't a decision based on the best available evidence- there was not only no evidence to support it, the only available evidence was that Setri was perfectly capable of breastfeeding and tolerating oral feeds. The proposition was ridiculous. No way would we agree. No bloody way, we said to each other.

We were met by the registrar, to whom we expressed our unwillingness to agree to their wish to intubate Setri. We told her it was a bad decision, we told her that Setri was perfectly capable of feeding, that we wanted them to allow us to give him a trial feed while a doctor observed the monitor. Not possible, she said. She would get a more senior registrar to speak to us.

I had wanted to draw the Special Care doctors' attention to the fact that they as a team had left me completely without support to maintain my milk supply when they placed Setri on nil-by-mouth. I told the registrar that no-one had taken the time to speak to me about expressing when they had taken Setri off oral feeds. She would make sure someone talked to me about it, she assured me. I had been expressing, I told her. I wanted to tell her that wasn't the point. The point was the poor procedure, poor patient management, a failure to recognise the importance of breastfeeding. But I finally- inevitably- lost my composure and started crying. I apologised to the registrar, but I couldn't stop. Across the nursery, Setri was crying too. The registrar hurried across the nursery, saying something to the nurses about Setri and I both being very upset and that it was in the best interests of both of us that they get him out of the isolette so that I could hold him.

So Setri was placed in my arms.

Although I was wearing a gown, Setri pecked desperately at my chest, making little 'eh eh eh' noises, trying to find a breast, growing distraught again when he couldn't find a feed. I tearily apologised to him again and again, telling him in a whisper that I was so sorry, I wasn't allowed to feed him. I stroked his head and eventually he gave up and stopped crying, nestled in my arms. He had lost a noticeable amount of weight since the day before, and bore such an unhappy, weary look on his little face that it tore at my heart.

The more senior registrar came to talk to us about putting a nasogastric tube in Setri. He had been on a glucose drip for a significant proportion of his short life, she said. He really needed proper nutrition now or it would start to affect his growth. “What you're saying,” I said, getting teary again, “Is that he's getting malnourished and he needs breast milk”. The registrar agreed. “So why don't you let us feed him?”, Gam asked. “We don't know how he'll tolerate oral feeds”, the registrar replied. Without showing his perfectly justifiable frustration, Gam repeated that Setri had been tolerating oral feeds, he had been feeding well until they arbitrarily placed him nil-by-mouth, and what's more, on his previous admission to Special Care Setri had been breastfeeding while hooked up to those very same monitors and the breastfeeding had had no adverse impact on Setri's respiratory rate, heart rate or pulse oximetry. Which was why, he reiterated, Setri had been discharged to go upstairs with me in the first place. I was so grateful to have Gam do the talking for me. I was exhausted and emotional, and incapable of standing up for myself any longer. Gam was just as exhausted, but he fought for me.

To no avail. Our only options were that Setri stayed on the glucose drip or that we agreed to a nasogastric tube. It was effectively an ultimatum: either Setri stayed on the glucose drip and got malnourished or we let them intubate him and he would get breast milk fed into his stomach via a tube. I thought of all that colostrum sitting in the fridge. I thought of the adverse effects on Setri of him not getting colostrum, of not getting breast milk, of quickly becoming malnourished. And I cracked.

Gam looked at me. “What do you think?”. I looked up at him, still cradling Setri. I looked into his eyes. I couldn't look at the registrar. I couldn't address the registrar. “Maybe it's better that he gets something rather than nothing at all”, I said to Gam in a small voice, through tears. “Are you sure that's what you think?”, Gam asked. “I don't know,” I said. “They're not going to let us feed him. Maybe it's better than him getting malnourished”.

“If you're sure,” Gam said.

We weren't sure. We were painted into a corner. We know better now, but at the time the doctors portrayed our choice as being between us having a malnourished baby and us having a baby being fed via nasogastric tube. If we chose not to let them put a nasogastric tube in Setri, it was implied, it was our choice that was going to lead to Setri being malnourished, not something that the doctors did.

That was why we broke our resolve and agreed to the tube. We felt disgusted with ourselves, but there was no other choice, was there?

It was suggested by the registrar that we might want to leave while they carried out the intubation. It was Gam who said no. Gam's training as a speech pathologist meant he was familiar with the procedure and how it should be carried out, and he insisted on being there so he could ensure it was done properly. He offered to hold Setri down while it was done. He told me to stay seated and not to try and watch. It nearly killed me to hear what was happening to Setri, our beautiful little boy. Our healthy little boy for whom we consented to being subjected to an unnecessary and invasive medical procedure against our better judgement. It must have been a hundred times worse for Gam.

Tears were pouring down my face as I listened to Setri struggle against the nurse and against Gam as the tube was worked up his nose and down his throat. Visitors to the nursery were looking at me by this stage as I sobbed quietly next to Setri's isolette, but I didn't care. Setri's screams were muted as soon as the tube went down his throat, to a bizarre, strangled scream. It was as if he were in one of those nightmares were you try and scream for help but no sound will come out. His cry was quiet, hoarse and squeaky, but I could tell he was struggling with all his might.

Just when it sounded like Gam and the nurse had finished, Setri coughed up the tube.

Gam and the nurse were talking. There was no evidence of gastric aspirate on the end of the tube that had been fed into Setri's stomach- evidence to show that the tube had reached the correct destination instead of going into his lungs, where if a feed were directed it could kill him. Nevertheless they were both reasonably confident it had gone to the correct location before coming back up. They set about re-intubating Setri, who continued to struggle with all his might, his voice hoarse and terrified as he tried to scream. Just as it seemed all over, once again Setri coughed and coughed and worked the tube all the way back up his throat and into his mouth. I cried and cried and cried. I must have made things so hard for Gam.

“See that?”, Gam told the nurse. “There are two coils of tube right at the back of his pharynx. You tell me, if that had happened during a feed and no-one had noticed, that he wouldn't have aspirated.”

The nurse agreed. It was true. Giving Setri a nasogastric tube posed a very real risk of complications. Even death. If Setri was being fed via NG tube and coughed the tube up, the milk could end up in his lungs instead of his stomach. At best that would mean a lengthy stay in hospital; at worst it would mean he died- even very small amounts of feed aspirated into the lungs can result in aspiration pneumonia.

We were withdrawing consent for the nasogastric tube, Gam told the nurse. “And I want that noted in his file,” Gam said. “I want you to write it down now, while we're here.”

Setri lay still now, traumatised and exhausted, his breathing hoarse, ragged, his respiratory rate through the roof at around 120 breaths per minute. If there were concerns about his breathing before, the attempt to fit a nasogastric tube had made everything so much worse. Gam and I were instantly full of regret for consenting to the procedure. Bemused, too, at how easily we had been coerced into changing our minds and agreeing to it. It wasn't quite so elementary as that- Setri's life was at stake. His wellbeing, for which we, as his parents, were ultimately responsible, had been compromised. However much damage the hospital environment had done to him, we bore ultimate responsibility. We had let our baby down. We had allowed the doctors to order a procedure that we knew was against his best interests, that we knew was harmful. I felt beaten. Pathetic. How easily we had compromised ourselves, and our little boy's life. I was disgusted with myself. But even then I didn't stand up for myself; we had stopped the situation from deteriorating even further, but we hadn't improved anything. We resolved, at least, not to make the same mistake again.

We left Setri to rest.

Back in my room, Mum phoned. They were still in Walcha she said. I could hear the annoyance in her voice. Dad had wanted to wait until the stock market opened because he had some business to take care of. Mum told me they would be leaving very soon. After hanging up I joked to Gam that she would probably take the car and leave Dad in Walcha.

While in the Special Care Nursery, Gam had snuck a look at Setri's medical record and noted the reason for his first admission to the nursery on the night of his birth: Respiratory Distress Syndrome (thereafter abbreviated as RDS). We both knew that was a bullshit diagnosis. Thanks to my familiarity with the research literature on premature babies I was aware that it was extremely unlikely that Setri had RDS, for the simple fact that it is predominantly a disease that affects preterm babies. Sure, probably 99% of the infants who pass through Special Care are preterm and do have RDS , and therefore probably would've looked plausible in the stats for admission, but it obviously didn't apply to Setri as he had none of the key signs bar fast breathing- which can be a symptom of a whole host of things, or a symptom of nothing at all. The list of differential diagnoses had since been expanded, then nearly exhausted and was now well into the realm of the utterly implausible. When was one of these so-called doctors going to call a halt to the stupidity? Were they really so reluctant to make their own observations instead of acting solely on the dubious notes of the very first doctor to see Setri?

Karen, my midwife, dropped by my room to see how we were going. We told her that Setri was on nil-by-mouth and explained why we thought that decision was particularly stupid. I could tell she was inclined to agree, though she didn't say as much. When I told Karen that the hospital was trying to discharge me because I was not breastfeeding she seemed angry. “Don't you worry”, she told me. She would go and speak to some people and sort it out. I would not be going home while Setri was still in hospital. Karen knew as well as I did that once I was discharged, the chances of breastfeeding being resumed in a timely fashion- if at all- were greatly diminished. With the generally unsupportive attitude of the Special Care doctors towards breastfeeding, the prospect was even slimmer.

We spent a few hours in my room, Gam falling asleep once again on the bed while I read a book. The one positive aspect of being forced to spend the night without Setri is that no-one came around to hassle me and I had had a few hours of sleep under my belt. As poor-quality as it might have been, suffering constant interruptions from the ward noise, it was better than suffering the constant interference of overzealous midwives. That said, the previous night's midwife struck me as someone who would have been more respectful and inclined to listen to me; had she been rostered on the previous two nights we may not have wound up in that situation in the first place. I especially harboured a lot of ill feeling towards the midwife from the second night, the one who had brought the registrars. Without Setri to take care of, I had a lot of time to dwell on things.

Out of the blue a senior registrar from Special Care showed up in my room to discuss Setri's case. This was the first doctor, it seemed, who realised that we were both educated and medically literate and that fobbing us off like we were idiots was not going to help anyone. We had been there 4 days and she was the first doctor to take us seriously. The first doctor not to treat us like simpletons and attempt to scare us into agreeing to everything by trotting out the 'he could be about to die' line.

Where were they up to in terms of the differential diagnoses?, we wanted to know. They had ruled out all of the most likely (meconium aspiration syndrome, infection, pulmonary hypertension) and were now looking at things like heart defects and oesophageal fistula, she said. They had booked an ECHO with a cardiologist, she told us, hastening to add that there was no evidence at all of a heart defect. Oesophageal fistula was even more improbable, Gam pointed out. Gam, as a speech pathologist, knew that if there had been an oesophageal fistula we would have known about it well before this point, as Setri wouldn't have been able to tolerate any oral feeds whatsoever; there was nothing to indicate a fistula and the doctors were clearly grabbing at straws if they were seriously considering this as a diagnosis. He pointed this out to the doctor.

"Oh. That isn't in his records", she said, upon being informed that Setri had been breastfed right up until his second admission to Special Care. It wasn't in his records that he had been breastfed at all. That changed things somewhat, she said. They would meet tomorrow and give us an update on diagnosis. At this stage Setri was still to be hospitalised indefinitely and she could not give us a prospective release date. We still weren't to feed him, she said. After tomorrow's meeting, perhaps.


We visited Setri again. We would have gone earlier but we had to wait for the 'no-visiting hours' to be over- once again prevented from seeing him because we I was not breastfeeding him because they had stopped me from doing so. God that made me angry. Setri's breathing was still coarse and rattly from the trauma of the nasogastric tube. Gam reassured me that he was ok and that this was not indicative of any problem. His breathing was still faster than the normal rate of 40-60 breaths per minute; his blood oxygen saturation had dropped during the intubation, Gam told me. Thankfully, it was fine now. I wanted to get Setri out for a cuddle, while Gam thought it best that he be allowed to rest- he was still sleeping out of exhaustion from the effort of twice coughing up the tube.

Back at my room we waited for my parents. They rang for directions and Gam and I groused about my dad's refusal to buy a GPS. Gam kept watch on the traffic below from the window, eventually spotting their car.

Once my parents had made their way to my room we took them down to see Setri.pissed me off

“He's a perfectly healthy baby,” I told my mum. “Once you see him, you'll understand.”

And they did.

Setri looked more perfect than ever. The rattle had faded from his breath and he actually looked peaceful. He had chubby cheeks, good skin colour, and would have put any other newborn in the hospital to shame with his ruddy good health. But he was in an isolette and they weren't.

“Oh.” Mum said. “He's beautiful, isn't he?”, I said. “He's beautiful,” Mum echoed.

The registrars had ordered that an echocardiogram be carried out, and when we arrived the cardiologist was there with the large machine. He wouldn't be long, he told us. There was no hurry. Setri looked a lot happier than he had earlier, and we were happy just to gaze at him while the man finished his work. The registrars had admitted to Gam and I that there was absolutely nothing to indicate a heart problem, but it was clear that by this stage they had had to discard the more likely of the differential diagnoses and were grasping at straws. We were happy for the ECHO to be carried out, as it was not invasive. Unlike the drip, for which there was no indication, and the nasogastric tube, for which there was no indication either but which carried real risks.

The cardiologist told us “he's fine”, appearing somewhat puzzled as to why he had been asked to carry out the ECHO, and left. Now we could get Setri out of the isolette for his first cuddle from his grandparents.

At that point a nurse came over to tell us that we had too many visitors and one of us had to leave. We were puzzled- we only had 2 visitors. It turned out that we were all visitors. Even Gam and I, as Setri's parents, were considered visitors. Hadn't anyone informed us of the rules?, the nurse asked. There was an information booklet we were supposed to have been given upon Setri's admission, filled with rules and information. No-one had informed us of the existence of any such booklet, nor given us one. Gam said he would wait outside. Mum and Dad both offered to leave, but there didn't seem to be any point in that, seeing as we had brought them down to meet him for the first time. Still, Dad insisted, and left to wait outside the nursery until one of us came to swap places with him. Gam and I had brought Mum and Dad to see their first grandchild for the first time and now one of us was being kicked out. One more thing that we should have been able to do as a family, put paid to by the RBWH Special Care nursery. Somewhere Setri never should have been in the first place. My parents were starting to get the picture.

We asked to get Setri out of the isolette. “You hold him first. He'll want a feed,” she said. “They're not letting us feed him”, Gam and I said, almost in unison. “What?!” exclaimed Mum. “That's stupid!”.

When Gam passed Setri to me, Setri was clearly looking for a feed. He opened his mouth, puckered his lips and frantically pecked at my gowned chest. “Just feed him.”, Mum said, all her previous notions of strictly following doctors' orders now well and truly abandoned. “There's nothing wrong with him- look at him, he needs a feed!”.

It was heart-wrenching looking at Setri desperately searching for a feed. He'd lost a noticeable amount of weight since being taken away from me, and I nearly started crying again as it dawned on me just how much lighter he had become.

Gam and I had resolved that we would start feeding Setri again. We had decided to front up to the doctor and tell them that either they let us feed Setri in the Special Care nursery, in their presence, or we would discharge him and breastfeed him at home. It never occurred to us that we could do what Mum suggested and just ignore the nurses, forget about waiting for the doctors, and just give Setri what he needed. No, we told Mum, we were going to feed Setri, but not until we'd told the doctors about it. Lord knows why we didn't have enough guts to do what Mum would have done! Gam asked a nurse if we could see a registrar, but we were told they were busy and we'd have to see them later. So we held off feeding Setri. Weak.

Gam left the room so Dad could come back in. It felt so wrong, Gam having to leave and loiter in the corridor like some kind of stranger rather than the father of our baby. Mum sat down and I passed Setri into her arms. Her eyes shone with tears behind her glasses as she sat cradling Setri, who was now asleep. Tears came to my eyes, too. I knew how much Setri meant to her, how much she had looked forward to meeting him. He was beautiful, too. Not a fragile, pink newborn, more like a plump 3-month-old, and seemed obvious to all but the Special Care doctors that he was perfectly healthy.

Mum asked me to take some photos of her holding Setri on her mobile phone so she could show people. She was bursting with pride. It would be her 'GrannyBook', she said, the semi-computer-literate grandmother making a play on the concept of Facebook. While Dad and I struggled to figured out how to take photos with the mobile phone, I asked Gam to come back in for a minute with our camera so he could take some photos of Mum and Dad with Setri. I was going to leave so we wouldn't be breaking the rules, but Gam told me not to be silly. He took some photos of the three of us with Setri, plus some of Setri alone, snuggled in Mum's arms.

Mum left the room after that so Gam could come back in. Gam held Setri so he wouldn't get upset: every time I held him he ended up distraught because I couldn't (or wouldn't) feed him. Dad stayed behind and we talked briefly about what had happened up until that point, once again leaving out my experiences with the Special Care Nursery registrars. Gam and I told my parents that we planned to discharge Setri the next day (Friday) no matter what. We would have to get a doctor to sign off on his discharge, which probably wouldn't happen until at least late morning, we told them, so they may as well wait and visit us at home in the afternoon. Why we assumed after so much precedent that everything would finally go to plan, I don't know.

Mum and Dad were staying with my cousin Rachelle, so they left the hospital to drop off their luggage, planning to return some time after peak hour traffic had died down. Visitors were allowed to the Special Care Nursery at all hours of the evening, I told them, so we would take them down again to see Setri.

Gam and I went back to my room after that, but I don't remember anything that went on in that time. What happened next we both recall with great clarity.

Mum and Dad having returned to the hospital, we once again headed down to Special Care Nursery. There were new nurses on duty this time, and a new doctor- a male registrar this time.

Dad waited outside and Gam, Mum and I washed our hands and gowned up. The nurses greeted us and one suggested I have some skin-to-skin time with Setri. Seti immediately went crazy with his desire for milk, pecking at my chest and making 'ah ah ah' noises. I tried to sneak him down and cover him with the gown a bit so I could surreptiously feed him. “Put him up higher,” the nurse said, “otherwise it's like you're teasing him”. That nurse seemed bossy enough to kick up a fuss if I tried to feed Setri; most of the other nurses didn't even really seem to think Setri was sick and just carried out orders, but I had a feeling that the bossy one was one who liked to curry favour with the registrars.

“Just feed him,” my Mum said.

I felt all knotted up inside. I wanted to feed Setri right there. He was desperate for a feed. It had been over 36 hours since he had last had milk, and my colostrum and transition milk was nearly all gone, I was producing more mature milk. Setri had missed out on most of the colostrum. Despite being so distraught and angry about the situation and determined to give Setri what he needed, Gam and I still wanted to 'do the right thing' and discuss our plans with the doctors. If I had my time over I would say screw the doctors, screw being worried about what they thought of us. Doing the right thing would have meant feeding Setri a lot earlier and not allowing ourselves to be put off for 36 hours to the detriment of our son's health. We had confused doing what was proper with what was right. So I said to Mum that we would wait a few minutes until we had told the registrar on duty what we were doing. Besides, I was scared of the bossy nurse.

Gam cornered the registrar. Gam did all the talking, as I was very much on the edge, emotionally, and not up to arguing a point. More than ever, I was grateful that I had such a wonderful partner, and that Gam was able to be strong where I wasn't. I was effectively drained of all strength by that point. Drained by the sleep-deprivation, by my experience at the hands of the overzealous midwife and registrars during my second night in hospital. I just didn't have anything left. I was a weepy, worthless wreck. I shudder to think of what I would have allowed to be done to Setri and me after that point had Gam not been around to stand up for me. I am so grateful that Gam was there, and I am so thankful that he knew exactly what Setri and I needed and wanted, and fought hard for us.

Gam laid things out for the doctor. We were not prepared to wait until some undefined time the next day for any meetings or discussions with other doctors. Setri needed to be fed and we were either going to feed him in the nursery, where they could observe the feed and how Setri handled things, or we were going to take him home and feed him there. Flustered, the registrar spoke of oesophageal fistulas- the latest of the differential diagnoses- and danger and death. Gam repeated what he had said to the senior registrar earlier in the day: there was nothing to indicate a fistula and the doctors were clearly grabbing at straws if they were seriously considering this as a diagnosis. At that point the doctor received a call on his pager and told us “I have to attend an emergency caesarean. We'll continue this discussion when I get back.” I couldn't even look the doctor in the face, I was weeping the whole time. It was hard to muster any appearance of credibility when I was all too aware that in his eyes I was simply an ignorant new mother, and an obvious hormonal wreck.

Unsure of myself, I asked Gam whether that meant we'd have to wait for the doctor's return in order to breastfeed Setri.

“No,” Gam said. “We've done what we said we'd do, there's nothing more to be said. We're going to feed him.”

Thankfully, the bossy nurse had just finished her shift and left. The new nurses were more laid-back and less intimidating. I didn't feel scared of them.

Setri latched on with all the hunger and eagerness of a baby who had been starved for half of his short life. My mum beamed with relief. I whispered to Setri how sorry I was, how sorry I was that I had played a part in denying him what he needed. I couldn't believe I had held out for so long when feeding Setri was so obviously the right thing to do. I wasn't surprised that he could 'tolerate' the feed, that nothing bad happened. I felt deeply ashamed of myself for being so weak and putting our own need to be seen as responsible by the doctors ahead of Setri's need to be fed. Setri was content. He was getting what he needed for the first time in 2 days. It felt so right to be feeding him, and while I was still shedding tears, I felt that a massive weight had been lifted. I was unspeakably glad we had defied the doctors' orders.

The nurses saw everything that was going on. Gam told them we weren't going to wait to discuss anything else with the doctor. “I'll just record it as nuzzling, then”, one said, willing to turn a blind eye. I practically melted with gratitude at her reluctance to make a fuss over our refusal to follow doctors' orders. It meant I could simply enjoy cuddling and feeding Setri, poor, beautiful, deprived little Setri, who was finally getting what he needed.

The registrar returned from attending the emergency c-section. It was obvious to him straight away that we were feeding Setri, despite the nurses both feigning ignorance and saying “he's just having a little nuzzle”. What was also immediately obvious to the registrar was that Setri was absolutely fine, just as we'd said he would be.

To his credit, the registrar played the cards he was dealt, and just as well: having gained confidence from our defiance of doctors' orders and Setri's obvious satisfaction, Gam and I were in no mood to be messed around again. We knew that the registrar was simply going by the information that had been left for him, and he was just the latest in a long line of registrars who were unwilling to question the orders of the registrar who admitted Setri to Special Care in the first place, despite the subsequent lack of evidence for any of the differential diagnoses they could come up with, let alone the 'Respiratory Distress Syndrome' that the admitting doctor had recorded as the reason for his admission.

What I would need to do now, the doctor said, was come down to Special Care every 2 hours to feed Setri, who had now happily passed out in my arms. I would need to start with small feeds, he said, to allow Setri's digestive system to adjust after having been deprived of food. I didn't foresee a problem with any part of those instructions. Setri had only taken a small amount at this first feed, and seemed to know how much he needed. As for getting up every 2 hours, that was a piece of cake. My spirits soared at the thought of getting to see Setri throughout the night. Another registrar would see us in the morning, said the doctor, appearing relieved that someone else would have to deal with us as he bid us goodnight.

For the first time in what seemed like an age, things were looking up. Gam and I were determined that we'd take Setri home the next day. We didn't want to risk more bullshit, and we told my parents to expect to visit us at home in the afternoon.

On this matter, too, I can't believe that I didn't think to assert myself properly earlier. I had only ever given them permission to observe Setri. Placing him on a glucose drip and putting him nil-by-mouth was something they did that was not only against my better judgement, it was in violation of what I'd told them they were allowed to do. Depriving Setri of colostrum was actively harmful to his wellbeing. We spent far too long arguing that point with disinterested medical professionals who thought we were stupid. We bitterly disappointed ourselves by giving in to the registrars' insistence on a nasogastric tube. Throwing that back in their faces and feeding Setri against their instructions was the best thing we ever did, and we should have done it sooner. Why didn't we? We wanted to work with the doctors, not against them. We wanted them to see that what they were doing was not best practice, and agree to do the right thing. We gave them too much time, at Setri's expense, and they failed us all. If that nasogastric tube had succeeded they would have had the excuse they needed to keep him in hospital indefinitely. Gam and I really beat ourselves up over nearly allowing that to happen.

We went back to my room, only to find that I was being moved to the gynaecology ward, along with a bunch of other women who were either pregnant or whose babies had been taken away. They were running out of room in the maternity ward. Instead of a single room-mate I now had five. We would still have a midwife on duty overnight, I was told. Being accommodated in the gynaecology ward meant a much longer walk to Special Care, so Gam was a little angry on my behalf. I was still fairly fragile, physically, and he was worried it would be too much for me to walk the distance on my own every 2 hours. I told him not to worry. Walking was still difficult, but I was so elated that I was allowed to feed Setri that I felt I was floating. It wouldn't be a problem.

Gam and I went down to the food court level to buy Subway sandwiches for dinner. My parents had decided to stop for dinner there too, before heading home to my cousin's place. I hesitated for a second before ordering jalapenos and hot sauce on my roast beef sub, worried about the possibility that the spicy food would somehow put something in my breast milk that would upset Setri. I was paranoid about everything now, that anything could become an excuse to keep him in hospital. The main topic of conversation around the table was, of course Setri. My parents, having seen him, were as bemused as we were about the doctors' insistence on keeping him in Special Care. They weren't angry like we were, though. We hadn't told them the full story. I had had enough of stifling tears.

We bid goodnight to my parents and went to Special Care to feed Setri again. Sure enough, he had just woken for a feed. We sat together and cuddled him in our arms afterward as he fell asleep. Something suddenly occurred to me: Setri's hair seemed very clean, apart from a small hard clot of what looked like old blood stuck in his hair at the back. “Do you think they give them baths down here?”, I asked Gam. We hadn't been able to give Setri a bath before he was taken away for the first time. Since then, so much had happened that we hadn't thought of it since. “I don't know”, said Gam. They weren't allowed to cut the babies' nails, we had been told- something we would have liked them to do because Setri's nails were so long and sharp, and he was accidentally scratching his face. “Do the babies get baths here?”, Gam asked the nurse. They did, we were told. If they were very sick they were given a sponge down with a wet cloth, otherwise they got a bath every couple of days. “Another thing we've missed out on”, Gam muttered. We felt unaccountably sad about that one. It wasn't that we had been hung up on little milestones like that before Setri was born, but it was something that had been taken away from us without any acknowledgement, let alone permission. If Setri had actually been sick it would have been another matter, but he wasn't. The fact that we didn't get to give him his first bath just served as another symbol of what we'd missed out on as a result of the actions of the medical staff responsible for his admission and our incarceration. Suddenly that first bath seemed a lot more important. One more thing they'd taken away from us as a family. It would have been a small thing to ask if we wanted to be involved, to take photos, to help bathe him.

Gam stayed for as long as he could before heading off for the night, telling me to let him know every time I headed downstairs to feed Setri. I promised that I would keep my mobile with me at all times.

The midwife on duty was an older lady. She struck me as old-fashioned and motherly, in a nice way. She asked about Setri and told me she would wake me every 2 hours. I didn't need the help, but it was nice to have her as backup. I smsed Gam before I fell asleep to make sure he got home safely. I was justifiably worried that he was too sleep-deprived to drive. Relieved that he had, I set an alarm on my mobile phone for one-and-a-half hours' time, placed it under my pillow and fell asleep.

I was jolted awake for the first time by my phone's vibrations, and as I pulled on some clothes I saw the beam of a torch. The midwife had come to wake me. I thanked her, went to the bathroom, filled my drink bottle, messaged Gam and headed off to Special Care. I tucked my phone into my tubigrip because I had no bra and no pockets. Gam answered within seconds, well before I reached Special Care. He had obviously lain awake waiting to hear from me.

When I arrived at Special Care I was informed by the nurse that Setri had just started crying for a feed. I washed my hands and gowned up at lightning speed, the requisite 30 seconds of hand-washing seeming to take an age. The day and a half of deprivation had not dampened Setri's instinct for breastfeeding, but the constant scaremongering by the doctors had affected my confidence. Even though Setri fed happily, I was conscious of every little noise. He was still hooked up to the monitors, and the sticky pads would periodically detach and set off alarms. I watched the monitors like a hawk, afraid that for once they would show that Setri's oxygen saturation levels were dropping when he fed. They never did, but I felt I had to monitor everything that was going on all the time so that Gam and I would be able to hold our own in discussions with the doctors. Even the 'comfortable' chairs provided for breastfeeding- and Gam had ensured I was set up with the much sought-after recliner- got uncomfortable very quickly, but despite everything I still felt blissfully happy holding Setri and talking quietly to him. Seeing him happy was so satisfying.

Setri fed for around 20 minutes before dropping off to sleep, and while I felt I could have held him all night I knew I should sleep. I reluctantly laid him in his crib (he had been removed from the isolette in the interim) and waltzed out of the nursery with a huge smile on my face. I felt happier than I had at any point since Setri was born. Thanks to Gam standing up to the doctors we had started feeding Setri -and oh thank god, I thought, that the nasogastric tube had failed, or we would be staring down a tunnel of further unnecessary medical intervention with no end in sight. We dodged a bullet there, I knew. But Setri was fine, and now, maybe, finally, it would become obvious to the doctors that he was fine. Surely?

I made my way back through the empty hospital corridors to my bed, making sure to fill my drink bottle at the sink and have a big drink of water so I'd be well-hydrated for breastfeeding. I smsed Gam to let him know I was safely back at the ward. Again he replied within seconds, so I knew he had been waiting up to hear from me instead of going to sleep. I messaged him again and told him to get some sleep, then I set my alarm for an hour and a half's time.

This time it was the midwife on duty who woke me. Special Care had called, she said, Setri had awoken and wanted feeding. I had the panicky thought that I had somehow slept through my alarm, but I checked and discovered that Setri had merely woken 10 minutes early. I hurried through a visit to the bathroom- I would have waited but I needed to change my pad. Paranoid about bleeding on the floor again. I smsed Gam on the way down. He was obviously still waiting up. Another woman was there to feed her baby, too. I had seen her last time I came down, too. She gave me a long-suffering smile. From what I overheard of her conversation with the nurse, she had volunteered her baby to be taken to the nursery. Her baby girl wasn't a premie, she had just been waking every hour for a feed and not taking much at the breast. When the midwife had offered for her to be taken downstairs and looked after so she could get some sleep, she accepted. She had other children at home too. That would be weird, I thought. Being in hospital to have a baby, away from not only your husband but your children too.

This nurse was a good one. Whenever Setri's alarms went off, she switched off the machines so his feed would not be disturbed.

Setri once again breezed through his feed and fell asleep in my arms. He seemed to take a lot more at this feed, and I thought briefly of what the doctor had said about ensuring small feeds, before dismissing this. Setri knew exactly how much he needed. His last feed had been reasonably small and this one was bigger. It made sense. I left that place again with a huge smile on my face. It's hard to describe the unrelenting feeling of elation I had at being close to Setri again, at being allowed to feed him and give him what he needed. It felt so right. It would all have been so much better at home, with Gam, but after being deprived of contact with Setri for a considerable period it felt like a huge thing to be able to hold and feed him at all. Once again I laid Setri in his crib. He woke up this time, but the nurse on duty reassured me that he would fall asleep very quickly and that I should go upstairs and get some sleep. While walking the hospital corridors, Gam phoned me, concerned that I hadn't been in touch since letting him know I was heading to Special Care. He still hadn't slept. I had just got out of the nursery, I told him, and was on my way back to bed. Please, sleep. You need it.

I ran into the midwife as I re-entered my room. How had the feed gone?, she asked. She sounded like she genuinely cared. I didn't think she knew about our situation, but perhaps it had been a topic of conversation among the midwives. It was great, I told her, beaming. I liked her. When I told her that I didn't think Setri should be in Special Care she gave off a distinct aura of disagreement, without actually saying so, but I had the distinct impression she cared about how I was going.

Once again I made sure to set my alarm. The last feed having taken longer, I could only afford an hour and ten minutes' worth of sleep until the next feed. For a second I wished for longer, so I could get a decent sleep, then mentally scoffed at my silliness. I was going to see Setri- sleep didn't matter. Besides, I thought to myself, when I got home I'd still be waking every 2 hours.

An hour and ten minutes later I was awake again, and glad of it. I followed my new routine: dress, drink a bottle of water, pee, message Gam, then head down to Special Care. In Special Care, Setri was just stirring for a feed. There was no sign of my midnight-feeding compatriot this time, although her baby was still there. I overheard the nurse talking to another nurse. The baby had kept awakening and demanding feeds on the hour. The woman was exhausted at being phoned every hour to come and feed her baby. The last time it happened, the nurse had offered to give the infant a formula feed so the woman could at least get another hour of sleep. “I gave her 30mL of formula,” I heard the nurse tell the other nurse. Tough call. The nurse obviously felt like there was no other choice that would preserve the mother's health. It was so quiet in Special Care during the night that I was eavesdropping on the nurses partly by accident, but when they dropped their voices I would strain to hear them in case they said something about Setri. None of the nurses treated Setri like he was sick, and ever since I had overheard the nurse questioning the admitting registrar on why Setri's pulse oximetry monitor alarm had to be set so high I had tried to keep my ears open to further snippets of dissent. To no avail, really. I didn't hear them talking about Setri at all. Either they were too clever to talk in front of us, or they had actual sick babies to worry about.

Back to bed.

I was once again in Special Care cradling Setri when the sun came up. Things always seemed to get busier after sunrise. I really preferred the place at night. It was almost pleasant to be there on my own, with Setri.

The birth of Setriakor: Day 3

When I went to bed that night I was nervous but confident that everything would be ok. Setri and I would be going home with Gam tomorrow. Gam and I had planned it all out.

It felt wonderful to have Setri with me again. I fed him, talked to him and told him we really would be going home this time. I told him that his daddy and I had sorted it all out and tomorrow we would be home with his daddy, the best daddy in the whole world.

Briefly, I felt some misgivings flutter through my head about promising Setri that tomorrow we'd be going home. Was I jinxing everything? What else could go wrong? Being separated from Gam for two nights and Setri for one was the worst that could have happened, I figured. Nothing else was likely to go wrong now- Gam and I had discussed everything. It was clear. I knew what to do, and tomorrow we would face down those doctors.

The registrar we had spoken to earlier in the day had seemed shocked that we were thinking about discharging Setri. Flustered, even. He could die, she said. We would need to speak to (be spoken to by) the doctor overseeing Setri's case. That doctor had not yet even seen Setri. “Did you feel judged?”, I asked Gam after she'd skittered off. “I definitely felt judged!”.

Setri had been fed, returned to his cot and had slept a while when he awoke and started grizzling. I offered him another feed, but that wasn't the key. What could it be? I rocked him for a while as he cried, and soon enough the crying stopped abruptly, there was a change in his facial expression, and he pooed. Noisily. Eureka! Now I knew one more thing that could make Setri cry: the act of pooing! I felt triumphant.

I wanted to message Gam and share my exciting 'news', so I ratted around for my phone, first in my bag, then under my pillow. I couldn't find it. I remembered asking Gam to pass it to me a little while before he left, but didn't remember what he'd done with it. Surely he couldn't have automatically slipped it into his pocket instead of handing it to me? Why couldn't I remember?

I decided it was more likely that I had only imagined asking Gam for my phone than he had slipped it into his own pocket. It must be in my bag, but I would look for it later.

It was uncomfortable bending over the crib to change Setri's nappy. I knew if I was at home Gam would be doing it for me. I wished we were at home. I had forgotten to bring nappy wipes and the only thing suitable was paper towel from the dispenser next to the sink, which I wet with water and used to wipe the dark, sticky poo residue from Setri's buttocks. I hoped it wasn't too rough on his skin. He protested at the cold water, but I got a new nappy on him.

Before I knew it, however, someone was shining a flashlight into the room and walking towards me. It turned out to be the midwife on duty. She had heard Setri crying. Why was he crying? Jesus, couldn't a baby cry in this place without the mother being interrogated? I heard other babies in the ward cry and cry and cry. Were their mothers hunted with torches? Seriously, what was up with that? I felt defensive. He'd just cried, I told her, and then pooed. I had just changed his nappy. He was fine.

“He's breathing a little fast, love”.

For fuck's sake. Not again.

He'd just being crying, I reiterated. He does that after he cries.

“I don't like the look of it, love”.

Would I mind if she took him down to Special Care Nursery to get checked out by a registrar? Why yes, yes I would mind, but I didn't say as much. What I said was more along the lines of a polite but firm “No thanks, he's fine.”

“I really don't like the look of it, love”. She would be back later to flush his cannula and would take a look then, she said.

I told her that my husband and I had decided to discharge Setri the next day and would like the cannula removed, not flushed. She clearly wasn't expecting this, and seemed flustered. She would go and fetch the paediatric registrar to come and take a look at him, she told me.

What happened next was surreal.

I was dressed only in a pair of disposable undies, having gone topless for ease of feeding Setri (and expecting some degree of privacy in my own, albeit shared, room).

The young registrar followed the middle-aged midwife into the room. She sat in the chair. Young. Blonde or light brown hair. Lipstick. Serious mouth. She had obviously taken the midwife's concerns very seriously.

She had also obviously confused me with a completely different patient.

The registrar proceeded to tell me, effectively, that I had no idea what was going on. My baby could die, she said. She was the registrar who had admitted Setri to Special Care the previous morning. What I didn't know, she said, was that she had been present at the birth. “Bubs was in a bad way,” she said. “There was a lot of meconium. He vomited after the birth”.

Hang on.

I was confused. I was pretty sleep deprived by then. I rushed over the events of the birth in my mind. I knew there were two midwives in the room by the time Setri arrived. Gam was there. I had been facing the wall and the end of the bed when Setri was born, so I couldn't say absolutely that there was no-one else in the room at the time, if they had left immediately afterward. I was pretty out of it in the immediate moments after the birth, but I distinctly remembered Setri being passed up between my legs almost straight away. He had yelled straight away. No-one had mentioned anything about him vomiting. I was sure I would remember that. Surely someone would have said something? My midwife, Karen? Gam? Gam would have said something, for sure! Wouldn't he?

As for the meconium, when my waters broke the water was tinged yellow., maybe with a touch of light green That wasn't a lot of meconium. Maybe it had gotten worse and there had been more when Setri was born? I couldn't say, but again, I was almost certain someone would have said something.

Still, I couldn't be 100% sure. I couldn't say that she wasn't there at some point. I couldn't say with absolute certainty that the amount of meconium hadn't increased. And maybe I was so out of it after the birth that it only seemed like a few seconds before they passed him to me, and he had had time to vomit and I had not only not overheard anyone remark on it but no-one had mentioned it to me. So I said nothing and just sat there with a disbelieving look on my face.

In hindsight, it's so totally and utterly implausible that it's kind of unbelievable I didn't dispute what the registrar said. But I had had 5 hours sleep in the past 3 days or so. I suppose I will have to put it down to that.

Then, for some reason, the registrar took it upon herself to quiz me on why Gam and I had opted not to have Setri vaccinated for Hepatitis B immediately after the birth. We had decided to wait until 2 months and get it done then. The only advantage in vaccination immediately after the birth that we were aware of, for babies who are not considered 'at-risk', is a population health one- basically a policy of 'get 'em while you've got 'em'. Gam and I are both immunised against Hep B, therefore Setri was not at risk. We didn't see the point in an extra needle at birth when he could just have it at 2 months.

I explained as much to the registrar, who then said “So, one of you is positive”.

I think at this point I actually said “HUH?!” out loud.

She repeated, “So, one of you is positive”.

No, I told her, wondering what part of “My husband and I are both immunised” she didn't get. We. Were. Both. Immunised. As required for our work.

Unapologetic for the inference, she moved on, asking if we were going to get Setri's other immunisations carried out. Huh? It dawned on me that she was angling to find out if we were crazed, anti-vaccine-hippy types. WTF? Er, yes we were going to have the routine immunisations carried out at 8 weeks, I told her. I was still genuinely puzzled as to why she would be asking. Even if we were crazed anti-vaxxers, how was it relevant? Did she think perhaps we were that rare breed of parent so deranged we would refuse any and all medical interventions for our child?

After telling me again that Setri could die and how important it was that I let them take him to Special Care, and after I again refused, the registrar turned to the midwife and said, exasperated, “Well, I can't make her do it”. To me, she said “At least let us flush his cannula, that way if something happens we don't have to cannulate him again. He's not an easy baby to cannulate, you know.” “I noticed”, I replied darkly, thinking of the scab on his right hand where a failed attempt had been made before his left hand had been cannulated. Now I knew who was responsible for it, and I hated her. But I agreed to let them flush the cannula. Just in case.

Setri cried when they flushed the cannula. It hurt. They left

I cuddled him in bed, feeling beseiged. I hunted desperately for my phone so I could message Gam, to no avail. He had taken it home by accident after all. We would wait it out, I told Setri. Not long until Daddy would be here and we could go home and be a family. I felt strong enough to make it. Staring down a registrar while dressed in nothing but my underpants had been tough, it had been intimidating, but I had done it. I would fend off all comers. I felt a little bit proud, and more than a little afraid. I knew by that point that the next time Setri cried I was in for it. I couldn't allow myself to sleep.

When he awoke and cried again a few hours later I willed him to stop. I took him into bed with me and fed him. When that didn't work, I sat on the side of the bed, rocking him in my arms, whereby he settled a little. Too late. The beam of torchlight bobbled its way into the room. Why was he crying this time? I had to admit- I didn't have a clue, I had been feeding Setri just in case he was hungry, a desperate attempt to shut him up. He didn't have a dirty nappy this time, and wasn't too hot. I rocked him in my arms. He was breathing a little heavily from the effort of all that wailing. The midwife again said he was breathing too fast, that she wanted to take him downstairs to Special Care Nursery. And I, again, refused. When Setri was settled, when he hadn't just been crying, his breathing was fine. He was feeding just fine. Dirtying his nappies just fine. But no-one ever bothered with what I had to tell them. They just stalked me and pounced whenever he opened his mouth to cry, I felt. What was it with treating a newborn baby's crying as being something out of the ordinary?

The midwife again said she was going downstairs to fetch a registrar to take a look at Setri.

I took Setri back to bed and fed him. He was ready for a feed by then, and I kept an eye on his suckling and swallowing to make sure that, too, was normal. I was getting paranoid that somehow I'd get something wrong- fail to make sure he attached properly, fail to make sure he was suckling properly- and they would use that as another excuse to try and paint him as a sick baby and take him away again.

This time the midwife had brought the senior registrar on duty.

Brown hair, slim, no makeup, scrubs. I was in bed, topless, with Setri still latched on to my chest. He was only suckling intermittently now. This registrar had obviously heard from the midwife and/or the previous registrar that Gam and I were planning on discharging Setri the next day, and launched her line of inquiry thus.

Indeed we were planning on discharging him, I confirmed. We were aware that we would have to speak with the doctor overseeing Setri's case and sign a form stating that we were aware we were discharging him against medical advice.

Then the bombshell came.

It wasn't so simple as that, the registrar told me. If she or other doctors felt that it was important that a baby not be discharged, the baby could be removed from parents' custody. She chose her words carefully. She avoided use of the word 'you', or reference to 'your baby'. She was merely stating a fact. The threat, however, was clearly implied.

I knew she was bluffing. Such cases typically only occur in life or death situations, and often after a court order. They weren't going to take a baby away based on a single, possibly benign, symptom, I knew that. Objectively, I knew that. But I was shaken.

I fought hard to stifle the impulse to cry. In hindsight I'm surprised I didn't also have the impulse to punch her in the face and immediately flee the hospital with Setri in my arms. Just as well.

I wished like hell that Gam was there with me. I'd be stronger if he was there. Thinking of Gam only made me feel even more like crying. I pulled myself together and dismissed the registrar's insinuation, tried to appear as cynical and confident as I could- how effectively, I was not sure.

Then, as I knew would eventually happen in this place, she critiqued the way Setri was feeding at my breast.

Having fed for some time, Setri was now pausing sleepily between bouts of sucking. This was perfectly normal. Not to the registrar, however. This was a sign of how he could not muster the strength to feed! This was a sign that he could not cope with breathing and swallowing at the same time! I don't know if she was ignorant of the fact that babies are not supposed to breathe and swallow at the same time- it's called 'suck-swallow-breath coordination' for a reason, or that it is perfectly normal for babies to rest between bouts of sucking- especially if they are sated, as Setri was by that stage. He was still breathing reasonably fast even though the last bout of crying had ended some minutes ago, I had to acknowledge, but was clearly undistressed.

Subsequently came an encore performance of the “He could die, you know. Drop dead, just like that” variety. Over and over. I knew that the neonatal period holds the highest likelihood of mortality for a baby. I knew we were in the danger zone. I knew, of course, that the fact that Setri was a 'mec baby' meant that he was at a higher risk than many other babies. But, Gam and I had reasoned, Setri was born healthy. He was still, despite the protestations of the doctors and maternity ward midwives, healthy now. He was, we knew, highly unlikely to drop dead as if God had simply snapped his fingers. It was not impossible, of course, just statistically extremely unlikely.

The doctors knew as much, even though they were saying otherwise. The reason they continued to say otherwise was that they were trying to scare a pair of parents who they assumed were simply ignorant and stubborn, and what better threat than the prospect of a dead baby? Suddenly, irrevocably dead. If we took Setri home, I told the registrar, and he developed obvious signs of distress, we would take him to a hospital closer to home, the Mater Children's Hospital. She again countered with the 'sudden death' argument.

I don't know how she wore me down. I was absolutely unconvinced by any of her arguments as to why I should allow her to admit Setri to Special Care. I wasn't sure how she did it at the time, and it's even less clear to me now. But eventually I gave in.

I agreed, I told her, to allow her to admit Setri to Special Care for observation only. I stressed that it was to be observation only, and told her I wanted to come down with him. She agreed, and so Setri was once again taken from my arms. She placed him in his crib. I got dressed.

It was around 5am. I had not slept even one minute that night; I had received 5 hours of sleep in the previous 72 hours. Sleep deprivation was taking a toll. I had dark circles under my eyes. I felt like a zombie. This must be how all new parents feel, I surmised.

Following the registrar and Setri out of my room, I felt distraught. I had no way to contact Gam. He had accidentally taken my phone. I had no small change with which to make a call from a payphone- I had left my wallet in the car, figuring if I needed anything I had my phone and could call Gam, preferable to leaving valuables in a hospital ward. So my wallet was with him too. I had no pen with which to scribble a message and no time, either. I followed the registrar, holding back tears.

The registrar stopped at the ward reception, to let them know where Setri would be from now on, I figured. While there I had time to steal a pencil from the desk. I asked the registrar to wait for a minute and hurried back to my room. I found an envelope and quickly scrawled “Gam- in Special Care”, before hurrying back to the registrar, whose face bore an impatient expression.

Yesterday I had been in a wheelchair. Now, following the registrar who was taking Setri, I struggled to keep up. When we arrived in Special Care I washed my hands and gowned up. Habit, already.

Would I mind, the registrar asked, if they put him in an isolette instead of a crib?

Would it make any difference?, I asked. Was there any particular reason he'd need one over the other?

“Not really”, she replied. It was just that there was already an isolette right here, and if I wanted a crib they'd have to move it. Also monitoring him would be easier, as the temperature in the isolette could be raised so he'd need fewer clothes, meaning there was less to interfere with the sticky pads of the monitoring device. I gave the go ahead to use the isolette, dismissing as far-fetched and paranoid the thought that briefly flickered through my head that the isolette and its more serious, clinical appearance may later be used as 'proof' of how sickly Setri really was. Never dismiss anything as mere paranoia.

The nurse, as lovely as the rest of the Special Care nurses we'd encountered previously, fetched me a chair.

Now in the isolette, Setri's breathing did look distressed. He was now asleep, but clearly experiencing some degree of chest retraction, his little abdomen pushing out past his ribs with every breath. If Gam and I had been at home with Setri and witnessed this, we would have taken him to hospital. This looked like respiratory distress, there was no denying it. Had the doctors been right all along? Regardless, I knew that this onset of what looked like genuine respiratory distress would be used as 'evidence' of such. While it was bad enough to be of concern, just how bad was it?

Setri's colour was good and his pulse oximetry, his blood oxygen saturation, was fine. His work of breathing did appear to be increased since being placed in the isolette, but apart from his high respiratory rate and the chest retractions, all signs were good. There was never any suggestion of giving him supplemental oxygen. His pulse was normal, his temperature also normal- the 37.3 degree 'temperature' the previous night had been an anomaly because I had overdressed him and then kept him in bed next to me, overheating him. Every reading over the previous 24 hours had been absolutely normal.

It was then that I overheard the doctor telling the nurse to set the monitor to alarm whenever Setri's pulse oximetry meter reading dropped below 94. That seemed rather high to be setting an alarm, I thought. “Why so high?”, I heard the nurse ask. I didn't hear the doctor's answer. I felt like the aim was to set the bar unnecessarily high for Setri's release. If his blood oxygen saturation dropped below 94 for even a second it would be used as evidence that his increased respiratory rate was evidence that he was struggling to get enough oxygen to his brain- evidence that he could, as claimed, come to great harm or even die if we didn't agree to everything the doctors wanted.

The registrar came to speak to me, pointing out Setri's chest retractions and saying how, even though he was now at rest and no longer crying, he was in respiratory distress and it was just as well he'd been admitted to Special Care for observation. I agreed, miserably. Observation seemed like a good idea at this point. Still, aside from monitoring his vital signs, which were fine and always had been, what were they achieving?

I sat, watching Setri, for an hour, as the sun came up and the nursery grew light. It was 6am. I struggled to stay awake, feeling the weight of every hour of sleep that was owed to me. In another hour he would need a feed, I thought. Gam would be here shortly afterward. I should try and catch an hour's sleep before Setri needed a feed, and maybe I would meet Gam when he came to my room instead of relying on him finding my note.

I told the nurse I was heading upstairs for an hour or so of sleep, and that I would be back soon. “Good idea” she said, reassuringly. I comfortably assumed that I would receive a phone call from the nursery, just like last time, if Setri needed feeding sooner. Never take anything for granted.

After an hour of sleep, breakfast had arrived. Cornflakes this time. Gross. I put the packet aside in case I got hungry enough later to want to eat them as a snack. I drank the juice but left the yoghurt this time because I knew Gam would be bringing me hot, fresh porridge made with organic oats and milk. Much more wholesome and tasty. Given that I hadn't yet heard from the nursery and it was only a couple of hours since Setri's last feed, I decided to wait for Gam. I knew he would be over fairly early once he realised he had my phone with him.

When Gam arrived I ate the porridge he had made. He'd brought sugar and and organic cream, too. Real food. I was conscious of the fact that my milk would be coming in soon, and was glad to be able to eat something substantial and healthy, in order that I could in turn sustain Setri.

I cried as I recounted the night's events to Gam. Poor Gam. He felt incredibly guilty at accidentally taking my phone home, leaving me helpless when I needed to contact him. I tried to reassure him. It was an unfortunate accident with the worst possible timing. It's not like either of us could have foreseen a night in which I would be under constant bombardment, deprived of sleep and bullied by some doctors of questionable professionalism.

Gam listened in amazement as I told him of the first doctor's claims- that she had been present at the birth and that Setri had vomited after he was born. She had not been there, he confirmed. A doctor had made a brief appearance in the room prior to Setri's emergence, as per protocol for 'mec babies', and left the room as soon as Setri gave his first cry when the midwives caught him as he shot out of my body, saying “He's fine, I don't need to be here”. That doctor had not been Australian, as the one who claimed to have been there was.

I could not, at first, tell him of the second doctor's implied threat to remove Setri from our care. When I finally choked out the story some minutes later I broke down, sobbing. Gam comforted me, saying of course it couldn't happen. He was as stunned as I was that anyone would even say such a thing, would try that kind of intimidation. The fact that it was a far-fetched and unlikely prospect in a situation like ours did not prevent it from having a strong emotional impact. That was when Gam first mentioned the word 'complaint'.

The behaviour of the two doctors, we agreed, had been unacceptable. We had been unhappy about the way things had panned out, culminating in Setri's first admission to Special Care, but that was merely a matter of a difference of opinion, the midwives and doctors taking what they saw as a prudent, cautious approach. An approach that we viewed as being overly cautious, that interfered with our time bonding as a family. An approach that failed to acknowledge the fact that I had been observing Setri longer and more closely than anyone, and listen to what I had to say. But not one that was callous, detrimental to my wellbeing and distinctly unprofessional. Until last night. A line had now been crossed.

At that point we wouldn't have believed that things were about to get even worse.

Around 8am I mentioned to Gam that it was odd that no-one from the nursery had phoned to summon me to feed Setri, as he had been feeding every couple of hours until they took him away, and it had now been 3 hours. We decided to head down to Special Care to feed Setri and find out more about what they had planned for him, and when he would be released. It was Wednesday morning and at that point, based on what we had been told the day before, we still thought that they would be releasing him the following day,

“He's on nil by mouth,” we were told when we arrived at the nursery and told the nurse we were there for Setri to have a feed. They had stuck a drip in him again. What the hell had happened to 'observation only'? When I agreed for Setri to be admitted, I had agreed to observation only. I stressed that at the time. He had been feeding just fine immediately prior to being admitted. There was evidently no medical emergency or they would have called. Why was Setri now not allowed to feed? “You'd better speak to the registrar,” the nurse said.

“We don't know how he'll tolerate a feed”, said the registrar. Another registrar, I noted to Gam later, when he asked me if I could recognise either of the two I'd encountered the night before. Setri had been feeding fine since birth, we told her. He had been feeding right up until being taken for admission, I said. Not only that, Gam told her, but we had been feeding him all of yesterday, too, while he was hooked up to the same monitors. His oxygen saturation had been unaffected by breastfeeding. Couldn't we try breastfeeding him while he was hooked up to the monitors and actually observe whether his oxygen saturation was affected? Whether he could tolerate a feed? No, said the registrar. It was too dangerous.

He's in respiratory distress, we were told. There's a chance that giving him a feed could kill him, or at the very least reduce the amount of oxygen going to his brain and give him brain damage. The same refrain. He could die, he could die, he could die... They had placed Setri on his stomach inside the isolette. I was surprised, given the posters plastered all over the walls of the hospital and nursery touting the 'supine is safe' theme. I asked the registrar why. To help lessen the work of breathing, she said. He was working pretty hard to breathe before, and this was to help him. So would a cuddle, I thought.

Setri had finished a feed literally minutes before being taken away, I assured Gam a little later, while the registrar attended to her work. He was supposedly in respiratory distress then too.

We approached the registrar again. Could she give us some information on his condition? What had they found from the tests they had ordered so far? Were any of their previous differential diagnoses (infection, meconium aspiration) looking likely? When could Setri come home?

There was no indication of infection, we were told. Of course it wasn't possible to be 100% sure before the blood cultures were finalised after 5 days, but infection seemed a very unlikely prospect at this stage.

His chest x-ray from the day before had come back clear. Perfectly normal. They would do another one today.

The most likely diagnosis at this stage, the registrar said, was persistent pulmonary hypertension. But they couldn't be sure.

If they couldn't be sure, we asked, when could he come home? The registrar prevaricated. We pushed. What she was saying, she finally admitted, was that at this stage they did not have a planned date of discharge. Prompt diagnosis, if there was one to be had, did not look likely.” Indefinitely, then,” I said. He was, she conceded, in the nursery indefinitely. She attempted to reassure us: it was unlikely that he would be held beyond Saturday. And yes, she acknowledged- it was possible that Setri's fast breathing was normal and that there was absolutely nothing wrong with him.

Gam and I were incredulous. We were expected to leave our healthy baby in hospital indefinitely on the off chance that doctors would find something wrong with him? What was this place? Didn't they have sick babies who needed the beds? Not only that but I was occupying a bed too, despite being perfectly well. This was a public hospital- public hospitals never have a surfeit of beds, right?

We headed upstairs. It wasn't that we doubted the good intentions of the doctors- even the two whose treatment of me we intended to make an official complaint about, however unacceptable their conduct may have been. Hospitals aren't filled with evil, malign types who want to experiment on healthy babies. But no-one was listening to anything we had to say. No-one was willing to acknowledge that we had been spending more time with Setri than anyone and were capable ourselves of observing his condition. We could accept that Setri was breathing faster than the average, healthy baby generally does. We could accept that this meant he was more likely to experience any one of a range of adverse outcomes. But given Setri was feeding normally, sleeping normally, crying normally and soiling his nappies normally, combined with a complete absence of evidence for any of the differential diagnoses for his fast breathing, we were happy to assume that the most likely explanation was that he was a normal, healthy baby who breathed fast- until there was some evidence to the contrary. To do otherwise meant accepting that he would be hospitalised indefinitely and prevented from establishing breastfeeding during this crucial period. Moreover, I had consented to admitting Setri to Special Care for observation only, and they, without consultation or permission, had taken it upon themselves to order nil-by-mouth and place him on a glucose drip. We felt justifiably angry.

Gam, being forced to go home alone every night without Setri and I, had not been sleeping well. He couldn't bring himself to sleep in our bed, so he slept on the lounge with a blanket. He was sleep-deprived- by this point he could not even sit down without starting to nod off. I was worried about him, despite his protestations that he was fine. I was fairly severely sleep-deprived too, by this point, and knew that he wasn't in any state to be driving to and from the hospital on a daily basis. Needing some sleep myself, I convinced him to lie on my hospital bed with me.

Gam passed out immediately, while I could not manage to fall asleep amongst the daily hospital hubbub. Soon enough we were disturbed by the arrival of the physio who had come for my routine postnatal visit. She checked my stomach muscles for separation of the rectus abdominis. I hadn't escaped the birth unscathed after all: being so large during pregnancy had left me with a 4-finger-width separation of the muscles, quite large by any standard. She provided me with a length of 'tubigrip' to wear and advised me on proper techniques to avoid straining this area and enable the connective tissue to regrow, as well as gentle exercises to facilitate restoration of the pelvic floor to its normal state, and advice on 'emptying the bowel' without straining the pelvic floor.

The latter advice was also contained on a poster on the back of the toilet door; despite feeling the urge to go, I had become so paranoid about not straining my pelvic floor while pooing that I had not been able to allow myself to actually do it. The poster helpfully mentioned that it was important that the knees be raised above the level of the hips, and that feet should be placed on a footstool to achieve this- only there was no footstool. This, combined with the many accounts I had read of painful defecation after birth by women on baby-forums meant that I effectively developed psychological constipation!

As soon as the physio left, Gam and I headed back down to the Special Care nursery and went to see Setri. We arrived at his nursery only to be kicked out by a brusque-mannered nurse because there were no visitors allowed between the hours of 1pm and 3pm- unless the baby was being fully breastfed. They were the ones who had stopped him from being breastfed in the first place! They had prevented me from breastfeeding Setri and now they were preventing us from visiting him?! I had not been able to hold Setri even for a cuddle since around 5am. Gam had not held Setri since he had left the hospital the night before. Setri had been without any physical contact from us for over 8 hours. I cried as we left the ward, and Gam put his arm around my shoulders.

We went and bought Gam some lunch. I sent an SMS to my parents. We had planned on them coming to visit and see us at home 3 days after Setri was born. Tomorrow would be the third day, and there was still no end in sight to our stay in hospital. Rather than putting them off any longer and waiting until we settled in at home, we figured they may as well come and see Setri while we were in hospital. I had sent them an email the day before complaining about Setri's unnecessary admission to Special Care, telling them that we were going to discharge ourselves the next day, asking them to delay their planned visit by a day to enable us to settle in together at home. Now I had to tell them that things had changed yet again, and to alter their plans once more. I also messaged my only family member apart from Gam in Brisbane, my cousin Rachelle, and told her she was welcome to visit in us hospital, as we had no idea when we would be getting out. Rach called back to say she'd be at the hospital after peak hour but that she couldn't come and see Setri as her husband Chris was coming down with a cold and she was worried she might be carrying the bug herself.

Shortly after we arrived back in my room, the midwife on duty came by, asking if anyone had spoken to me about being discharged from hospital. I had been listed for discharge because I was not needed in the hospital as Setri was no longer being breastfed. First they had prevented me from breastfeeding him, then from visiting him. Now they were trying to kick me out.

No-one had spoken to me about this, I told the midwife. She said that as it was now so late in the day (around 4pm) it was effectively too late for me to be discharged and she would make sure everything was in order for me to stay the night.

After that we headed down to see Setri again. He was distressed and crying and very unhappy. But we weren't allowed to hold him. We watched him cry through the isolette. One of the nurses told us we could put our hands through the holes and pat him, so we did. It didn't help him feel better, nor us.

Gam drove home to cook me a proper dinner, my first in 3 days.

While Gam was gone the new midwife on duty came by to introduce herself. She had a student midwife with her, and made a good impression straight away. She asked about my baby, and I told her that Setri was in Special Care. I also told her that none of the doctors down there had bothered to enquire as to whether I wanted to express breast milk for Setri, nor provided me with any information or support on how to go about it. I knew full well how to express, but had no way of collecting the colostrum. I was upset that Setri was missing out on colostrum- it contains important immunologic components and acts as a laxative for the meconium in the baby's gut.

I felt angry that the doctors, supposedly so worried about Setri's health, couldn't seem to give a shit about my ability to breastfeed him after they'd finish messing about and depriving him of nutrition. If I did not have a high degree of knowledge about breastfeeding, thanks to my health sciences background, I would have been screwed, my milk supply quite likely messed up. An average mother would have found it more difficult to cope with the treatment I was receiving, and I wanted the irresponsible nature of the doctors' treatment of breastfeeding to be highlighted.

The midwife promised to come by with a syringe for collecting the colostrum and show me how to express. She also noted from my file that no-one had checked my perineum since my midwife immediately following the birth in order to be assured it was intact and that no injury had been missed; she would do that too, she said.

Rachelle showed up while Gam was still out, and I broke down crying as I told her an abbreviated version of events. It was so hard to get the words out. We had been expecting to go home 6 hours after the birth, and now we were here indefinitely, despite Setri being so perfect. I couldn't fathom how it had all gone so wrong after such a great birth. I really wanted to take Rach to Special Care and have her see Setri, have her see just how wrong all the doctors were. I wanted someone to confirm that Gam and I weren't crazy. My midwives from the Birth Centre didn't think we were crazy. They'd been checking in on me every day, checking in on Setri in Special Care, too. But they weren't about to openly question the necessity of Setri's admission, even though they had listened sympathetically.

I didn't tell Rach about what the two registrars had said to me the previous night. It was too much to even think about, let alone say out loud.

Gam returned with dinner while Rach was still there. A spicy lamb dish, with preserved lemons, served with brown rice at my request- I was still being very conscious of my fibre intake because of my fear of going to the toilet. Gam refused to eat any himself in case I needed more. I made sure to leave some of the lamb, hoping he would at least eat some when he got home. Otherwise, I knew, he would not eat anything.

After Rachelle left, the nice midwife came by again. She gave us a couple of syringes and advised me on how to express. I found my own technique much more productive and Gam helped me by collecting the colostrum in the syringe. The syringe proved inadequate and we requested a specimen jar, which the midwife duly provided. Gam held the jar for me while I expressed. It was a funny experience, 'milking' myself. It felt good that we were doing it together, doing something for Setri. We went to Special Care again, bearing the little jar of creamy yellow serum, handing it to the nurse on duty to put in the refrigerator. I knew Setri probably wouldn't get the colostrum- he was nil by mouth, after all, but I planned on expressing as much as I could as a way of making a statement to the doctors who had ignored the importance of our breastfeeding. I wanted to fill that fridge with those little yellow-lidded jars. I wanted them to know that I was still there and that they couldn't ignore the fact that I was breastfeeding Setri. That it was important to me that he be allowed to get what he needed. It was far too passive a statement, but it made me feel a little better.

Setri was still inconsolable. We sat for a while, but there was nothing we could do. We weren't allowed to give him what we needed. Now, I wish like hell we'd told them to go to hell and done the right thing sooner.

Back in my room, my parents called. They'd received my SMS. They'd also received my email the previous day, in which I complained about Setri being admitted and called it unnecessary. Mum admonished me to do what the doctors said. It was important, she said. So-and-so's baby was a 'mec-baby', and he got meningitis. You couldn't be too careful.

They would drop my grandmother at my Aunt's house in Walcha the next day (Thursday); they would probably travel to Brisbane on Friday. Depending on whether they felt they could handle all that driving they may even see us tomorrow. Gam and I smiled as I told him this, knowing that my mother would move the earth to see her first grandchild the next day.

Gam left for the night at 9pm, reluctantly heading home to an empty house.

The midwife and student came by and checked my perineum. It was all intact, the midwife confirmed. I asked if she could provide me with some more specimen jars for expressing, which she duly returned with.

I expressed again at 10pm, wishing Gam was there to hold the tiny jar. It was a lot harder to manage without him. I did my best to provide an impressive quantity in the small container. I knew I would have to work hard to keep up my supply. Setri was a big baby, and would consequently need more energy than the average baby just to maintain his weight, let alone to grow. Knowing that expressing is never as effective as actual breastfeeding in keeping up milk supply, I wasn't sure I would succeed. I took the little jar to the ward reception to be labelled, asking for it to be refrigerated and taken down to Special Care.

I lay in the dark, alone. I had the room to myself- my roommate had been discharged that day. I listened resentfully to the sound of squalling newborns, their crying unimpeded by the intrusive investigations of overzealous midwives. I was still angry that first one midwife, then another, had suggested to me that Setri's crying was in some way an abnormal behaviour for a newborn baby. What kind of idiot did they take me for?

I contemplated going to Special Care to sit with Setri through the night, but decided against it. It was probably important for my milk supply that I got some sleep, I thought. I woke every time the nurses' call alarm went off. I regretted ever using that alarm.