Frying pan or fire. Between a rock and a hard place. Between the devil and the deep blue sea.
Sometimes in life, you’re presented with a situation so terrible that the available choices seem equally dreadful. Having your baby diagnosed with serious abnormalities while you are pregnant is one of those cases. Depending on many things, including the nature of your baby’s condition, the stance of your hospital/doctor, and local/national laws, you may be given the shocking option of ending the pregnancy prematurely. It’s a shocking option because you and your partner want this baby. It’s a shocking option because until now you have been thinking about due dates, baby names, your impending maternity leave, while grappling with morning sickness and your expanding waistline. It’s a shocking option because this scenario simply never entered your head. The reality that this option applies to you and your baby – and that the doctor isn’t talking to someone sitting behind you – is devastating.
My husband and I have found ourselves in this position not just once, but twice. In both cases we ultimately chose not to go ahead with those pregnancies. It was a situation that we simply could not have imagined when we got married. We expected and hoped for a drastic change when we started trying for a family. We just didn’t get the one we bargained for.
We got married in 2006, and we later we decided to try for a baby. I eventually found I was pregnant, but that ended in miscarriage at 6 wks in early 2008. Still, I was expectant for long enough to order ‘Baby Names 2008’ from Amazon. That book stayed on the shelves taunting me until I took it down a year or so ago (along with ‘What to Expect When You’re Expecting’ – I can tell you quite firmly that nothing I have experienced while expecting was covered in that book!).
Robert – 22 May 2009
When I found myself pregnant again, I was petrified I would miscarry again. To our relief, I didn’t miscarry. Unfortunately, it was the start of something much worse. At the first scan, when I was almost 11 wks along, to our shock they found that our baby had things wrong with him – the scan showed an increased nuchal (fluid at the back of the neck) and an exomphalus – a hole in his tummy with his bowels sticking out (I purposely use the words baby rather than the more clinical ‘foetus’ because he always was, and will always be, a baby to us).
We were rocked to the core – finding anything wrong had been the last thing on our minds. As the weeks went by, the abnormalities deteriorated, and at the same time, the penny dropped about our ‘options’. I was horrified that ‘it’ was an option. I didn’t realise that people who wanted babies, who were in a position to bring them up, could be faced with such a decision. But when they told us, at 18wks, that our baby, who we’d by now discovered was a boy, had developed oedema (fluid under parts of his skin), leaks in his heart and agenesis of the corpus callosum (a failure of the middle structure of the brain to develop), we realised that our baby could never be ok. And the day after that scan, I felt him move for the first time. Now my level of mental agony went through the roof. I simply couldn’t believe we were in this situation. After getting a second opinion, which concurred that the brain was failing to develop properly, we agreed to end the pregnancy at 20wks, and I gave birth to our baby after they induced labour. We called him Robert, and he was born on 22nd May, 2009. We were able to spend all the time we wanted with him. We didn’t know what to do or what to expect, but we did take some pictures of him, and below is one of them. The hospital were very kind and provided a basket for him, a blanket and some little clothes. Leaving him behind at the hospital was devastating and we went home totally distraught.
Daniel – 28 May 2011
My bubble of naivety had now been truly popped and I read up everything I could get my hands on about fetal abnormalities and what can go wrong in pregnancy and birth. But lightening couldn’t strike twice could it? Surely the next time would be our time?
We then found ourselves expecting again. The 12wk scan was fine – our baby had no problems! We were so happy! But I knew we had the 20-week anomaly scan coming up, and it obviously isn’t called that for nothing. And indeed, at that scan they found something. The ventricles in his brain (we were having another boy) were larger than they should be. We were horrified. I simply did NOT want to give birth to another dead baby. It was impossible. How could this be happening to us? Just how trigger-happy were these doctors?! Just how low is the bar before they recommend termination?! I was so furious it is almost beyond description. But the brain abnormality continued to deteriorate. As much as I wanted to, we couldn’t deny what was happening to our baby. Every time we had a scan (and I was being scanned weekly by this point), more and more of our poor baby’s brain was being obliterated by fluid expanding in his brain, a condition called ventriculomegaly/hydrocephalus. If he lived, and it was an ‘if’, he would be mentally and physically disabled. How could this be? Who or what was doing this to us?! We realised that there must be something genetic going on, but the doctors had conducted every test and we were no closer to getting an answer. When the extent of his brain damage was beyond doubt, we took the view that it would not be fair to bring him into this world knowing full-well that there would be no cure, just management at best. We again took the decision no human being should ever be asked to make. I gave birth to our second son, Daniel, at 29 weeks on 28 May, 2011. Here is a picture of our lovely little boy:
It took another few months to get an answer, but we did at least get one, for which I will be eternally grateful for. It turned out that both our babies had a chromosomal abnormality, called an unbalanced translocation. They eventually ran a test called an array CGH, and found both boys had an unbalanced translocation of chromosomes 6&9. Because they both had the same issue, the doctors knew either myself or my husband had to have the balanced version. Further tests showed that it was me. More tests showed that neither of my parents have it, and I am what is known as ‘de novo’ – a new, spontaneous occurrence.
Now we know it is ‘BT’, we now also know that ‘UBT’ pregnancies have a scarily high re-occurence rate. Many UBT pregnancies end in first trimester miscarriage; those babies which survive beyond the first trimester are liable to die at any point in the rest of the pregnancy, at birth or in the early days/weeks afterwards. Those that survive beyond infancy generally have significant disabilities. Many people with BT will struggle to have healthy, living children, but many are lucky and beat the odds.
Because the condition is identifiable, IVF combined with a relatively new technique known as pre-implantation genetic diagnosis (PGD) became available to us. And because we are so traumatised by our experiences, we went for IVF/PDG rather than leave it up to Nature again.
Our first round (August 2012) yielded four embryos, but they were all unbalanced. A second round in March 2013 resulted in eight embryos. Six were unbalanced, but two were unaffected. Sadly, they failed to implant.
Despite what you might think, I am not pro-TFMR/anti carrying-to-term in any way, shape or form. If you are faced with this situation, you have my genuine respect and admiration whatever your decision. I certainly do not advocate me and my husband’s (joint) decision as right for anyone else. The emotional journey someone goes on when they choose not to continue with a wanted pregnancy of a much-loved baby is one that seems entirely unchartered. Much less when it happens twice. I have found it to be a very hard journey, impacting practically every aspect on my life: mental health, relationships with friends, family. One day I hope people recognise that just because you have chosen to bring your pregnancy to a premature end doesn’t mean you aren’t grieving your baby just as much as anyone else whose baby has died.