This is the story of Kelly, Lee & Molly
17th September 2019, I sat alone in a Marie Stopes clinic waiting to say goodbye to our much longed for daughter Molly.
Molly was diagnosed with both Downs syndrome and Turner syndrome, a genetic mix so rare she would never live. We made the heartbreaking decision to end the pregnancy, something we never dreamt we’d ever have to do.
Just 3 weeks earlier on a Friday morning, we sat excitedly waiting for our 12 week scan. This pregnancy was our final round of IVF and everything had gone so well up till then.
We’ve not had what you’d call an easy ride. Infertility, IVF and multiple miscarriage fill the past 8 years and in 2017 our whole world was torn apart when our twin girls Lily and Ava were stillborn at 18 weeks due to an incompetent cervix. I was lucky to have had much needed counselling with Jacqui at Petals Charity to support us during this time.
But this pregnancy would be different, we were booked for a cerclage operation with Professor Shennan on the Monday morning, we felt safe. I can remember us both being filled with hope that morning, hopeful we’d finally be bringing our baby home.
“The fluid around the neck is a little on the high side”
I locked eyes with Lee, felt fear in my heart. Molly had a nuchal measurement of 4.3, higher than the 3.2mm level that says normal. But we could see her waving on the scan, heart beating as strong as ever. I remember thinking this just couldn’t be real, it couldn’t be happening.
I heard the sonographers whisper ‘spina bifida’ and I burst into tears.
We were taken to a private room in the Fetal medical department where they explained what would happen next. We’d need a CVS test (Chorionic villus sampling) to rule out any genetic conditions and we’d be called Monday with my screening blood test results.
The conversation turned very quickly to termination, or medial management, when just minutes before we’d been planning our babies future. I remember sobbing and telling the team that this was our last chance, our last round of IVF, how could this be happening? I called to postpone the cerclage operation in a complete daze.
The CVS was the following Wednesday, 5 agonising days spent googling everything I could find on nuchal transparency, CVS, and searching for any positive stories I could find.
My blood results came back as a 1 in 15 chance of Downs syndrome and 1 in 10 for Turner. We were already preparing for a very different life with our child.
The procedure was done, we were sent home to wait for the news. Another 5 days went by. Agonising. Heartbreaking. Numb.
Not knowing where to turn, I called ARC. They were incredibly kind, so, so kind. I sobbed and tried to explain what was happening to us, asked them what we could do. Jane talked to me with such empathy and explained what options we had if it was the news we dreaded. I’d never heard of ARC before and the invaluable work they do, my god they so wonderful.
The news came on the following Monday, Molly was diagnosed with both Downs syndrome and Turner syndrome. So rare to have both, she would not make it to birth alive. We could continue with the pregnancy knowing we’d lose her or make the decision to end it.
Having already lost two babies to premature labour, I knew I couldn’t go through that trauma again. I couldn’t wake each morning wondering if I’d lose our child that day.
We were offered a medical management at our hospital. It was that or a termination which I’d need to arrange myself elsewhere. Imagine being in this position, this state of utter grief, terror, panic, confusion and then being told you’ll need to arrange a termination for yourself.
TFMR, a termination for medical reasons was sadly a term I was already familiar through a good friend who’d suffered the same tragic experience. It was never a term I imagined would play such a huge part of our own lives.
I was advised to call a Marie Stopes clinic, I found the local one and arranged a pre-assessment appointment.
When we arrived, Lee wasn’t allowed into the assessment room with me. Not allowed to sit and comfort me whilst I answered the endless questions, not allowed to see his daughter on the screen one last time to say goodbye.
It still surprises me how quickly the terminology changes. Just 3 weeks ago the words were baby, child. How quickly those words change to foetus, product. I remember correcting the assessor in that appointment, that this was my child, not a product. It’s not right, things need to change.
At the end of the appointment they explained that Lee would not be able to be with me on the day of the termination. He could sit with me in the waiting room until I was called, but that would be no more than 20 minutes. I would be there for the entire day. You see, there was no allowance made for couples in our situation at that clinic. No private area, no time to say goodbye as a couple, no empathy.
I broke down outside the clinic, I must have been hysterical as the receptionist came out in an attempt to calm me down. I sobbed that Lee needed to be with me, I couldn’t do this on my own. She told me ‘it’s the way it is for everyone’. It made my blood run cold.
The termination was arranged for Sept 17th. My poor Dad drove me there as it was close to where they lived. Imagine having to drive your 42 year old daughter to a termination clinic. I felt heartbroken for him, another grandchild he’d never get to meet.
I was left alone on the ward. The medication made me shiver uncontrollably so I tried to sleep to block it all out. When I was taken through for the procedure I sat on the operating table crying, still shaking. The anaesthetist told me I didn’t have go through with it, they could stop. I had to explain that Molly wasn’t going to live, that we didn’t want to do this. I remember feeling so sad that they didn’t know.
I went back to work a week later. Tried to block it all out, to not think about it. It was not one of my better decisions, and I quickly began to fall apart with the grief that was building.
I found it difficult to concentrate back at work, and so difficult to engage with people. I run a busy digital agency and my role is very public, but I couldn’t cope with going to meetings or talking to anyone. I forced myself to go to a networking event, but only because I knew I could have a drink to get myself through it.
As the weeks went on I was anxious about everything, I remember getting really worked up about travel plans if I have to go anywhere new. I’d leave hours of time to get there and check the route over and over again.
I’ve since had private counselling and a tonne of support from my dear friend Zara who heartbreakingly has been through the same experience. I have people around me who understand loss, and I’ll be forever grateful for Petals and ARC for all they did for us.
Our experience is something I’ve struggled to talk about and this is the first time I’ve written any of it down. I won’t lie, it’s been tough and there’s been many tears, but I would do it over a thousand times if it helps just one person that has to go through TFMR.
The partnership this year between ARC, Petals and Tommys is so, so needed. TFMR is an isolating, frightening experience, we need more awareness and more support for everyone affected by it. This is the start of that change, no-one should have to suffer alone.