I was 22 weeks pregnant when we saw the foetal medicine cardiac specialist; I could feel the baby moving. She scanned me for 45 minutes, saying nothing. Then she drew a diagram of the baby’s heart and, where the aorta should have been, she put a line through it.
That picture will stay with me for ever. She drew it beautifully, but I knew what it meant. Dorothy, our daughter, had an interruption of the aortic arch, no left ventricle and a massive hole in her heart. The most likely outcome was that she would be stillborn. If she was born, they would have to do open heart surgery within a week, and she would need more throughout her life.
We were looking at death in infancy, unless we got a heart transplant. There was a 99% chance it was going to end in an overwhelming amount of grief. And I knew I had to protect our older daughter, two-year-old Betsy, from that – and the only way to do that was to do it now.
We had a termination for medical reasons (TFMR) at 22 weeks and five days. There was a special room at the hospital, but it was still on the labour ward. I heard other women in labour and crying babies being born, and it broke me. I had worked with patients who’d had TFMRs, but nothing prepared me for the emotion of it, because I’d always treated it a bit like a transaction. I would say I understood, but there was a detachment. And actually, I always thought it was almost a skill set, that sense of, “I’m a scientist, I’m going to help you. I’m very sorry for your loss. It’s very black and white to me.”
I was so angry. I had spent 21 years making people’s dreams come true, working with thousands of couples to help them create a family. It felt so unfair.
I went back to work after just six weeks – I was with a different clinic then – and I regret that now. The first time I picked up the phone it was a woman whose five-month-old premature baby had died. When I came off the call, I threw up in a bin.
All I wanted to do was be pregnant again. Twice, I was, but I miscarried both times. It was a very grey, dark time: making people pregnant, being really pleased they were pregnant, and living this absolute nightmare. Then we took a break, and I fell pregnant again. Fred was born almost exactly two years after we lost Dorothy.
I never talk about my experience in consultations – it’s about the patient, not me – but I get it. And I think they respond to that, even without knowing. The way I work is not a transaction any more. I’m sat in front of someone just like me, who is breaking or has been broken. And what’s now almost as important to me as the science is protecting people’s mental health through this journey by understanding and managing expectations. If a patient has had an experience like mine, I always ask their baby’s name; I always talk about their baby. Before, like so many people, I would have steered clear, worrying it would upset them. Now I know that talking about it is exactly what you want to do.
READ RELATED: Don’t Swallow That Ocean Water—There’s Probably Poop in It
I remember that overwhelming impatience to be pregnant; I know that when you’re struggling to conceive you live in two-week blocks. You move from period to ovulation, to pregnancy tests, to period. It is exhausting. And I think understanding that mindset has empowered me, too, especially when we’re suggesting people slow down. I know that thought is impossible to bear.
after newsletter promotion
If you’re pregnant, you can walk into your manager’s office and tell them, and they know exactly what you need. If you walk in and say I’m having IVF, or I’m losing my baby, there’s no protocol. There should be processes in place. So at the Evewell fertility clinic, where I work now as an embryologist and laboratory manager, I’m using my story to talk to employers about what a fertility treatment or pregnancy loss journey looks like, and what women need.
I am traumatised by what happened to me. I can’t stop other people experiencing trauma, but I want to try to protect them when they’re on this journey. I want to try to make it even half an inch better.
