Holly and Marcus’ story
Termination for Medical Reasons. I wish it were called something else. Better still, I wish it didn’t ever need to happen. But it happened to us in December, the same day we also laid Marcus’ lovely Dad Derek to rest. We found ourselves making decisions we didn’t even know existed and thrown into an alien world of facts, terminology and pathways. The grief is so heavy, we really had no idea. This is our story.
Marcus and I have been together for 23 years but never married. Not for any particular reason, I think we would but we just haven’t got around to it. We’re not great at decisions so by the time I had turned 40 and Marcus 49, we never had a very serious conversation about starting a family. We’d been really happy living a full life and that was okay. Or so we thought.
Our story starts just after the first lockdown in the summer of 2020 when at the first opportunity we managed to take a lovely holiday in Greece. It was a very happy holiday and one where I now know our little Raspberry was conceived (we were keeping the sex of our baby a surprise and so Raspberry stuck from an app saying ‘your baby is the size of a raspberry’). We had a wonderful holiday and our baby couldn’t have come from a happier place.
By the end of August, I realised something wasn’t quite right and a test told us we were pregnant! We did a couple more to be sure and even paid for a scan at 8 weeks as I’m not sure we could quite believe it! Over the next few months, we kept our secret and allowed ourselves to be excited for our new life. We’d both come out of the first lockdown ready to live life again. And so there it was, Raspberry it seemed had been gifted to us to do just that.
The 12-week scan came back low risk for Edwards’, Patau’s and Down’s which was a relief but it did show I had low PAPP-A. I wasn’t too worried as it meant I’d get more monitoring and scans. I remember us leaving the scan on cloud 9 with a due date of 29 April.
Marcus’s mum, June, was living alone because his dad Derek was being looked after in a care home and had managed so well through the months of lockdown, we couldn’t wait to give her some happy news. So, we recorded the happy shock on her face – such a lovely memory. We decided to record every special family member and friend we told. Videos neither of us can watch now. I realised I loved being pregnant in these happy months. Marcus was being so caring and looking after me and in turn, I loved sharing my body and doing everything I could to look after our little Raspberry.
And then the storm came. At the end of November, we were told Derek had been unwell in the care home and the following morning, immediate family were invited to visit him. Sadly, this would be the last special time Marcus, his Mum and brother would spend with Dad. Later that evening he passed away. I’m so grateful for the time they were able to have with him.
Whilst COVID wasn’t the cause of death, it was later confirmed he did have it, so Marcus and his Mum had to then isolate away from me, whilst grieving, for 14 days. It was hard not being able to comfort one another. Every day I was dreading the news they might have COVID. Thankfully they were okay so we could head off to our delayed 20-week scan full of love and hope. Our baby was becoming even more important to our entire family.
We were scanned for a while and then told that they couldn’t see the heart and the hands properly. Being optimistic, we responded to friends and family asking if the scan had gone okay by saying all was well except the baby was in the wrong position, so we needed to return the following day to complete the scan. We really didn’t see it coming.
The following day we went back. Same place, same time, different sonographer. I’m convinced the lady the previous day must have seen the same thing – why didn’t she get a second opinion then rather than make us come back and go through it all again? The second scan seemed to be taking a while but then that can be normal. I do remember asking specifically ‘‘is everything you have seen okay?’’. And then it came. I can’t really remember how it was said but we were told there seemed to be a problem with both our baby’s arms, hands and heart. We were shown to the family room with the tissues and memory boxes. Whilst waiting I remember going to the loo, seeing lots of people in the first room huddled around the monitor. We didn’t know what to say or do. Eventually, a midwife told us we would be referred to the nearest fetal medicine unit. We were devastated. All I could think was ‘Please let it be a mistake, please let our baby be okay.’
Two days later, on 17 December, we sat in the fetal medicine waiting area. We could hear the cries of new babies in the maternity unit next door. We were scanned again, trying to contain our emotions, but again the same news came. Our baby had Radial Dysplasia in both arms, meaning one of the bones was missing and therefore our baby didn’t appear to have thumbs, and the hands were clenched and bent in at the wrists. They suggested an amnio and before I knew it the procedure was happening. We were then moved to the cardio consultant for a heart scan and more devastating news followed. Our baby also had Fallows Teratology. It was explained that this condition alone could be treated but would require a number of operations. We’d been at the hospital for hours, overloaded with information and medical terms, trying to process and understand. We could continue with the pregnancy or we could end it. If we chose the latter, I felt I was very much pushed towards a medical termination. I asked a lot about surgical but they seemed reluctant re this choice and I couldn’t get any clear answers about why.
Devastated and shocked, we prepared to research and get some help. We found ARC. I don’t know where we would be if it wasn’t for Sara. We learned more about the condition and prognosis and finally made the heartbreaking decision to let our baby be a bright twinkle in the stars. We felt it was the kindest and ‘best worst’ choice.
I organised my own surgical termination because the hospital could only support me by sending me to a hospital over three hours away. I had to attend alone (due to COVID) in a clinic with amazing staff. The procedure was painful and emotional. I was told as I was being put under anaesthetic that whilst a postmortem isn’t possible (I was aware), tissue samples could be retained for further testing. This was completely new and I had no idea how to organise this with my hospital. So, whilst about to go under I was alone trying to answer the questions of what to do with the samples. The end result was that just an hour after coming around from the general, I was ringing round different departments at my hospital trying to find out if this would be helpful for further testing, how to organise the transport and asking what chemicals it would need to be stored in. I’ve since learnt through my genetics consultant that whilst the amnio enables a DNA sample from our baby, we would have benefited from having a lot more DNA from the tissue samples.
There were some very caring and compassionate professionals involved in my care but others less so. My partner and I are still on our journey and just want to do anything we can to help other families that sadly find themselves in a similar position. We got involved in some focus groups, forums and fundraising for ARC. The work ‘Time to Talk TFMR’ does to raise awareness and break the TFMR taboo is wonderful. Some days it felt like a desperate climb out of a very deep hole but I’m so lucky to have a wonderful partner – we’re a tag team and we push each other along. After over 12 months, we found the courage to find out our baby’s sex, a boy. Still very sad but we have to look forward.
Dear Billy, we will always love you and remember, just for a few months, how happy you made us. We loved being pregnant. It completed us. I’m sorry that it wasn’t to be, but I know you are watching over us and being looked after by your wonderful grandparents and great-grandparents. Love you always. Mum & Dad xx