Finally, we meet our son

Our baby was dead, and now I would have to give birth to him. I was terrified. But if I’d thought we’d go straight from the ultrasound room to a delivery suite, I was much mistaken. There was no room reserved – we’d have to wait our turn. They were very busy and we were not an urgent case!!! Whatever they had given to our baby had made me very sleepy and we lay out on the lawn in front of the hospital, where I snoozed on my poor husband’s lap for a good few hours. It was a beautiful day. The sky was blue and the sun was shining. I thought, how can it be so nice when we feel so utterly wretched?? The contrast was astonishing.

I gradually emerged from my stupor, and it was late afternoon and they still hadn’t found us a room. What the hell was going on? They then told us to go home and they’d ring us from there. Now I was terrified if I left they’d forget about us. How long can you have a dead baby inside you? I had no idea. But eventually a room came free and I got in that evening. But it was too late to induce me, they would have to do it the next morning instead. My husband, very reluctantly, left me and returned home. I slept fitfully. At 6am I wandered around the corridor and found a midwife willing to induce me.  Contractions began, and boy they were painful. I asked for pain relief and because we weren’t going to have a live baby, I could have morphine, via a pump which I could press a button and administer it myself. I’ve had this machine in the past when I’d seriously injured myself in my mid-20s, and it worked great then, and it did now.

Our baby, a boy, was born at 6pm the same day. He was just over a pound in weight. When I try to remember the emotions of that time, my strongest memory is of thinking ‘he wasn’t meant to be, he wasn’t meant to be’. He was perfectly formed with little hands and legs, but the oedema on his tummy was big and red. His face looked strange, as if he had Down’s. I knew this couldn’t be the case as the CVS had tested negative for that, but anyway I had never seen a baby at 20 wks gestation before, so I had no way of telling.

The midwives were very kind. I had no idea what to expect, but they wrapped him in a little blue blanket and put him in a little blue basket with a tiny teddy bear. He was weighed and measured, and they took pictures of him with his teddy bear which they put in a booklet for us. We spent the rest of the night with him, cuddling him and talking to him, and taking our own pictures.

We left the hospital the next day. Leaving him was the hardest thing. We’d requested a post mortem, so we knew we’d be back in a few months for that, but we asked the hospital to arrange his funeral. With that, we got in our car and headed home.

A part of my soul dies

So what happened next? It seemed as if every time we went for a scan they were finding some new abnormality.  We weren’t being given a fatal prognosis, but we didn’t know whether he’d last to term or go on and survive. And that was the crux of our angst. We found ourselves coming to the conclusion that we didn’t want him to have a life of suffering. Surely it would be kinder, certainly not for us, but for the baby, to end the pregnancy?

So that’s how I found myself, at 20 wks gone, sat in a room in the Fetal Medicine Department, taking a pill which would soften the cervix in preparation for birth. I returned to the department two days later, after the pill had taken effect, and went in to the same ultrasound room where all our scans had taken place. There, in a similar procedure to the CVS, the consultant put a needle into my tummy and gave our baby an injection into his heart to stop it beating. Now, the thing is, when they do that, they may as well put the needle into your own heart for all the difference it makes. A few moments before, our baby, a boy, was moving. And now he is not. And we’ve done that. Oh my god.

The world has gone mad

We had had no appreciation of what we were letting ourselves in for when we turned up for that first, fateful ultrasound. Until then, we simply hadn’t realised that couples who were willing and able to have children could ever find themselves in our situation. We thought the ultrasound was to look at pretty pictures of our baby. But here we were.

I asked the hospital that if we decided that it would be best not to continue, what would happen? I knew after a certain amount of time you had to give birth, but I’d assumed it was quite late on in pregnancy. You give birth after 14 weeks came the reply. Oh my god. So these people expect me to go into labour and deliver our dead child? Are they crazy??

As fate would have it, the day after the 18 week scan I felt my baby move for the first time. Now this really was torture. I was acutely distressed. It’s as if in a matter of moments everything you have ever believed in your whole life counts for nothing: treat others as you yourself would want to be treated. Do not kill.

But we still couldn’t accept what they were telling us. While I knew at an intellectual level that what they were telling us was correct, I needed to hear it from someone else for my heart to really accept it. So I sought out a private ultrasound clinic on Harley St and we raced there, not least because I’d learnt from frantic Googling that there was some debate about whether the corpus callosum could be seen that early in a pregnancy. But this scan showed the same issue – the brain was not in good shape.

Stop looking and it will be ok!!

From then on, we pretty much had a scan every week. We saw the head of the fetal medicine unit within four days of the initial scan. I should have known then that if you are in the NHS system and get to see the head of the department within a few days, you are in fact screwed. But we thought we were getting amazing service, which of course we were, but we didn’t realised where it was leading. He performed a CVS. This is where they stick this amazingly long needle straight into your tummy, without anaesthetic, and take a sample of the placenta to have a look at the baby’s chromosomes. It sounds and looks alarming, but my experience of it was fine – I'd had waxing which had hurt far more.

  

The results of this came in within a few days, and all seemed to be ok – no abnormalities had been spotted. Together with a scan soon after which showed that the exomphalus had cleared up, we thought we’d got away with it. But they wouldn’t stop the scans. The scans would last an hour. A geneticist joined us for one of the latter scans. This in itself was scary. Inside, I was getting angrier. I thought they were determined to find something wrong with my baby!!!! STOP LOOKING AND IT WILL BE OK!!!!!!  

They then found something called oedema, basically excess fluid, and this was under the skin in the head and chest. Still, this didn’t sound too bad; human beings are almost entirely made up of water, aren’t we??

Then we came to the 18 week scan. Here, they told us that they could see leaks in the heart and that the middle part of the brain was missing, a condition called agenesis of the corpus callosum, and thus the rest of the brain was malforming because of this missing bit. The consultant told us this is a Very Bad Thing. I don’t think there are words to describe what we were feeling. We simply could not believe it. We had been so hopeful, so optimistic. And now the penny dropped at what they were asking us to consider. No no no no no no no no.

Dreams turn to dust

It had been a year since I miscarried, and my friend had just died. I don’t know how we managed to conceive at a time like that, but evidently we did. When we found out our news, our first concern was that I might miscarry. But much to our relief, once I got past the 6/7 week mark when miscarriages are most common, we thought, ‘this is in the bag, fantastic’. Oh, how naive we were.

The letter from the hospital soon arrived with the appointment for the first scan, and we skipped into it a few days later, completely oblivious to the fact that this would turn out to be the last day we would ever experience true happiness.

I was 10wks+5days. It didn’t take long for the ultrasound technician to tell us that she was very concerned and that we would be booked in to see the consultant. She said she could see an increased nuchal and an exomphalus containing bowel. What on earth was she talking about? We really couldn’t believe what we were being told. As we rapidly learnt, the nuchal is the fluid at the back of the baby’s neck and if there’s too much, it’s very likely that there’s something wrong with the baby. Some babies do have thick nuchals and turn out fine, but they are the minority. As far as the exomphalus was concerned, it sounded pretty unpleasant, but it is usually a fixable thing. However, the two things together are not a good sign, and so the ultrasound technician had hit the panic button. We went home speechless, and while my husband got straight onto the pc and started researching, I went straight to bed, too depressed to stand.