Monday, April 11, 2011

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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