Marina’s story
In spring 2023 we were stunned and ecstatic to finally become pregnant with our second daughter via egg donor IVF. My 20-year infertility journey had involved a previous miscarriage, almost a decade of Asherman’s syndrome, operations to remove uterine scarring, IVF to conceive our beloved six-year-old living daughter and two further failed IVF rounds. We were intensely aware of how precious this baby was and were so excited and grateful to imagine welcoming her.
We arranged a private scan at 11 weeks as I was naturally anxious after treatment and was terrified of miscarriage, checking regularly for blood and counting the days until the so called ‘safe zone’. Having reached 11 weeks with no pain or bleeding we were naïve enough to believe that the baby would be fine. Afterwards I struggled for a long time with feeling that I should instinctively have known that there was something wrong – instead, we walked into the scan room smiling and ready to see our miracle baby. It was a beautiful June sunny day and I’d worn a special outfit.
Nothing could have prepared us for the terrible words: ‘I’m so sorry, I think there may be a problem with the baby.’ I went totally numb as we listened to the doctor explain the increased nuchal translucency measurement and the structural anomalies with our baby’s heart. Together with the shock and horror, I also felt a deep sense of shame and personal failure that my body had let this baby down by not somehow healing her inside me, although I have since tried to see how irrational this is.
We were referred immediately for a CVS in hospital the next day, a procedure which I found painful and distressing. It was awful walking through the maternity unit with the posters about breastfeeding and new mums everywhere. We could see our baby moving on the screen and I tried to absorb and remember her as much as possible – it turned out that was the last time we saw her on ultrasound.
We then had a horrendous ten day wait for the results. Existing through that time was a blur. Taking care of our living daughter gave us a structure but the whole limbo period felt like some kind of nightmare or cruel joke. Babies and pregnant women seemed to be everywhere. Eventually we received the call, my husband and I bent over the phone as a very kind midwife explained that our daughter had a diagnosis of Trisomy 21: Down’s Syndrome, and that we would have to make a terrible decision, one which no parent ever imagines themselves capable of making.
As we battled with the agonising process, we faced the brutal reality of considering who would care for our new daughter once we were no longer around – both of us in our mid-forties, and our living daughter also being on the autism spectrum and having some additional needs. The prospect of our baby needing heart surgery immediately after birth and potentially needing further painful operations and other procedures throughout her life was a desperate one and filled us with horror. It felt like we would be gambling with her life.
The day of the termination was the worst day of my life. At 13w 6d, I felt that a medical delivery would be utterly unbearable and in an acute state of distress, I begged the hospital to allow a surgical procedure, which they agreed to. At the time it was the ‘least worst’ option for me, but since that day I have fought with a lingering sense of guilt and remorse that I was not brave or dignified enough to honour and see our baby who we loved so much. However, I have tried to forgive myself for getting through the storm the only way I could. The medical staff on the gynaecological ward were outstanding – gentle, gracious and respectful in every aspect of care in this unbearable situation, which I will never forget.
Signing the consent forms for the termination felt profoundly wrong and against all my instincts as a mother. It was like signing a death warrant. My husband cried as he watched me hold the pen – it was awful for him to have to sit and wait while I went into theatre. I held my little bump one last time and whispered ‘goodbye’, still not quite believing what was about to happen.
When I came round from the anaesthetic I was already crying and wished I could be put back to sleep so I could be somehow closer to our baby. Everything felt dark and comfortless, and I remember just saying ‘she’s gone, she’s gone’.
The next few months are difficult to recall – I felt like I was living in a grotesque pantomime where we were expected to ‘get back to normal’ within a few weeks, whereas we staggered shellshocked through the grief, unable to connect with each other or anyone around us. Friends and family tried their best, but most were too horrified or felt too awkward to mention our baby at all, or else gave strong ‘advice’ to ‘move on, not dwell’ and forget about it as quickly as possible, which made me very angry. Why would we want to forget our baby?
The only thing that helped was being outside, and I planted snowdrop bulbs for our baby and let the pain wash through me. I spent as much time alone as possible. Certain people stopped speaking to me when they learnt the reason for our TFMR, quick to judge without ever walking in our shoes, never testing their comfortable certainties in the crucible of reality. I still find it extremely troubling that a T21 diagnosis, being the poster child for anti-abortionists, forces devastated parents into a political space, where the headlines and soundbites bear no relation to the unique turmoil and lifelong haunting that goes on within individual loving families, whatever decision they arrive at.
After several months I telephoned the ARC helpline, and it is no exaggeration to say that call probably saved my life. For the first time, I was listened to, not dismissed; held, and not brushed aside; given counsel, and not fed with empty platitudes.
Our baby’s due date was 3rd January 2024, and we saw the snowdrops coming up for her.
I named her Marina, as she only knew water, and never air. We learnt so much from her time with us and are forever changed. She is always here with me in my heart, and I think of her as my winter girl.