Gabriel Dominic Forde was stillborn in February 2012 following a complex pregnancy. At the 12-week ultrasound there was a high Nuchal translucency result of 4.1mm indicating a chromosomal abnormality. We were told that he would either have Edward’s, Patau’s or Down’s syndrome and there was only a conversation about the timeframe for a termination.
My husband and I wanted to continue the pregnancy and felt quite rushed and overwhelmed by the information presented. We were given support by one of the perinatal team who met with us and signposted us to the charity ARC (Antenatal Results and Choices) who give impartial advice and information about how to navigate the options available following an unexpected result during an ultrasound. As I was closer to 13 weeks of pregnancy it was explained that I could have a quicker termination (a medical abortion) but once I was 14 weeks pregnant this would need surgical intervention or delivery of the fetus. This information was very upsetting for us to hear at the time and we were unprepared to make any definitive decisions whilst none of the results were guaranteed.
My husband and I made the decision to continue the pregnancy after the blood tests showed that there was a 1:2 chance of Down’s syndrome compared to the other conditions. I can remember trying to find information on the internet that could provide advice but finding only the Down’s Syndrome Association giving positive information about proceeding and realistic information about the potential challenges our baby would have.
We wanted to confirm the Down’s syndrome diagnosis so we could prepare for the future so we had to wait several weeks until an amniocentesis could be performed at 20 weeks. Unfortunately, this showed more complications, and the baby not only had talipes (club foot) in both feet and a hole in the heart but a more serious and non-viable condition, fetal hydrops was noticed. Fetal hydrops is a rare condition which has a poor prognosis for survival with a build-up of fluid in the baby’s organs leading to neonatal death or death within the first year of birth. Most cases of fetal hydrops indicate the pregnancy is non-viable. This was shocking and devastating to hear from the consultant who was very sympathetic and supportive when delivering the news. I didn’t really know what the prognosis would be, so I tried to research myself which was a negative experience as all of the information online was very stark and only gave the option of the baby’s death. There was no mention of palliative care or any option of bringing the baby into the world early so that he could be born with a peaceful ending. We were now faced with another dilemma – something which again I wished to avoid which was a termination after 20 weeks which is an abortion where the baby is delivered by birth after its life has ended.
We continued to be hopeful in the pregnancy and try to remain positive – at a later scan the hydrops seemed to have resolved, and we were told that we had a better chance of the pregnancy going to term with just the talipes and Down’s syndrome to contend with. Sadly, at around 28 weeks of pregnancy a growth scan showed that the baby was failing, and that the placenta was not providing nutrients as well as it should do. This was called ‘no end diastolic flow’ which would lead to growth retardation and the death of the baby if urgent action was not taken. I can remember the consultant ringing the major hospital for this specialist care, as the baby would have urgently needed to be delivered. However, as he had Down’s syndrome the advice to us was that it would cause more harm to deliver a known Down’s syndrome baby into the world who was already suffering fetal hydrops and growth retardation. We were advised to get to 32 weeks where this could be reviewed. At this stage the fetal hydrops had returned.
Perhaps this date 4 weeks into the future was a futile kindness from the hospital who knew that I had not wanted to have a termination. They must have known that it was impossible for any baby to survive for 4 weeks with no end diastolic flow, as this condition only deteriorates and eventually the blood flow reverses into the mother and the baby dies. Gabriel clung to life whilst the placenta failed him and gradually stopped providing him with what he needed to live. At a final scan around 31 weeks, it was clear to see him gasping for breath in the womb. This was awful to witness as he was clearly in distress. The consultant’s advice was to let nature take its course and that if he was delivered, they could try to rescue him – however if he started to breathe on his own there would be an ethical dilemma of keeping him alive when he would be very brain damaged and disabled. We never would know the extent of his disability and I always have wondered since what my life would have been like if we had never had the diagnosis of Down’s syndrome. Would his life have been seen as more viable by the NHS? Would he have been brought into the world and survived? It is difficult to think of these questions.
Gabriel died in my womb after 17 days of fighting. I felt a flurry of final movements then nothing more and he was stillborn 5 days later. I had counselling from the hospital which really helped to cope with the aftermath of the stillbirth. The hospitals who cared for us were fantastic and the compassion and support was vital during this time.
As time went on and I began to heal, I reflected on the feelings I had during this experience and how I tried to find information to help me to continue a pregnancy that I knew was going to fail but found nothing to support this. It seems bittersweet that if I was pregnant today there would be a lot more information and support out there to enable me to have more choices during the pregnancy. At the time it was very isolating and lonely. I wanted to ensure that there was information to support other women facing this choice so I wrote a book about my experience with the hope that this would help others. The book is called ‘Still my son’ and it was written in memory of Gabriel Dominic Forde, our much-loved son who we think of every day.
Corinne Forde
