• Sara

Luca's story - May

Updated: Aug 19, 2018

This post is best read while listening to 'Le ragazze stanno bene' by Le luci della centrale elettrica.

1st May

The odd excitement that we felt at learning that our baby seemed to 'only' have a heart condition which was very possibly correctable at birth, vanished once we went for a second fetal echo, with a senior Fetal Cardiologist from Great Ormond Street Hospital. He confirmed that Dr Ushakov was right: our baby had Tetralogy of Fallot, but he also seemed to have developed a second issue - a tricuspid regurgitation. I didn't fully understand what that meant, but the doctor's words that followed the diagnosis were clear enough: "If the regurgitation doesn't get better, your baby's heart might grow disproportionately to the detriment of other organs, such as the lungs. We aren't able to predict how this will go, and the prognosis will vary considerably depending on this new problem. We'll check back in a month's time, once the baby has grown enough for us to determine how serious this issue will be."

Once again, I wasn't able to do much more than ugly-cry, but I managed to mutter one question: "What's the worst case scenario?" to which the doctor replied: "The baby might die in the womb. Your current risk of miscarriage is... let's say around 20%. Or, you might want to consider a termination."

Saying that we were crushed is a foolish understatement. Waiting one month was unthinkable. We left the hospital in tears, confused, frightened. What was this bloody rollercoaster that we had unwittingly boarded? What was this never-ending nightmare that neither of us deserved to experience? I decided I'd had enough - I went to my GP and she signed me off work for the rest of the month, until our next scan. My mum and dad flew to London for a week, and helped out as best as they could, from cleaning our flat - grief is draining, and even the simplest house chore feels like a mission - to playing uplifting music trying to keep our spirits up.

During that week, I began doing something that no pregnant woman should ever find herself in the position to do: I started researching the topic of termination. Daniel and I talked at length about our baby's situation, and we both came to the awful conclusion that, if his heart problem worsened to the point of becoming fatal, we would terminate. For the baby's sake, for our sake. We were effectively given this option at our scan, but we chose to hang in there a few more weeks - to give our boy a chance, to give life a chance, to let nature do whatever it was that it needed to do. Perhaps, to save our boy. I knew my baby's heart could stop beating at any time, I was painfully prepared for this to happen, yet I wasn't prepared to willingly let go of him without knowing for sure that there was no way in the world that he could be fine.

While researching about termination, I soon realised that almost all of the information and resources that I could find were aimed at women who decided not to keep a healthy baby. It took me a good while before discovering that what I really needed to learn about was something called 'termination for medical reasons'. Whereas there are several charities offering support and knowledge around miscarriage, stillbirth, abortion, and so on, I found absolutely nothing to shed any light on my personal situation. How was that possible? What did all the women who had been faced with a terrifying prenatal diagnosis do, where could they find help and guidance?

Thankfully, I came across ARC - Antenatal Results and Choices, an association supporting parents who have been given a distressing prenatal diagnosis. I phoned them up a couple of times and mostly cried, but I was also given some precious information around the legal timings for termination. In the UK, terminations can be carried out up until 24 weeks via either surgical or medical management (which means either with a general anaesthetic, or with the medical induction of labour) - but only in very few specialised hospitals or clinics. Generally, most NHS (and private) hospitals won't perform surgically-managed terminations after 12 weeks. I was nearly 16 weeks at the time, and couldn't even fathom going through the induction of labour only to deliver a baby that would be stillborn. I was just hoping to get enough information with enough notice to choose the best, safest, and least traumatising way forward.

I decided I needed to physically detach myself from London, and that I needed to be in my hometown for a couple of weeks. The day before flying to Italy with my parents, Daniel and I visited Homerton Hospital to gather more information around second-trimester terminations. Our next scan - and the one that would officially determine whether or not our baby's heart condition was going to be potentially fatal - wasn't until the 5th of June, and by then I would be nearly 19 weeks. The hospital staff gave us leaflets, talked us through the surgical procedure, and provided us with phone numbers to ring if we decided to go through with it.

The midwife we spoke to was extremely sweet, and just as we were leaving she smiled and said that she hoped never to see us again - we very much shared that same hope.

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