This is the story of Zara & Lex
On October 26 2018, we said goodbye to our darling son Jesse. We’d made the heartbreaking decision to end his pregnancy after being told he was simply “incompatible with life” due to a rare defect called Body Stalk Anomaly. This is called, I was to later learn, a ‘termination for medical reasons’. Something at the time of his diagnosis I’d never even heard of, let alone thought I’d ever have to go through. Just two weeks earlier, we’d been for yet another scan and watched as he waved and danced around on the screen. I was ecstatic – nervous but oh so happy. We’d been through our first round of IVF 3 years previously which resulted in our beautiful son Jax and now our first frozen transfer had worked too – we just couldn’t believe it had been successful! How lucky we were. I’d had a very traumatic and difficult pregnancy and birth with my son Jax, including many dashes to hospital in an ambulance and having to have emergency surgery on my ovaries at 10 weeks pregnant due to complications from IVF, so I went into my second pregnancy with some real anxieties and worries. Thankfully I’d been working with my incredible counsellor Flora Saxby from Petals for over a year by the time I discovered I was pregnant again. I had no idea she would be so vital to me in the weeks and months to come.
I will never forget that last ‘normal’ scan we had. The sonographer initially told me everything looked fine. At 12:07pm I texted my mum and sister and said “Scan fine. He’s VERY active! Waving and kicking away”. I sent my husband Lex back downstairs to look after our son Jax who was waiting with a friend of ours. I was asked to sit in the waiting room at the Early Pregnancy Unit whilst a nurse sorted out some anti sickness and pain meds for me. But instead of the nurse, the same sonographer called me back into the scanning room. My first thought was that she’d forgotten to give me a scan photo! I went in and the door had barely closed before she started telling me what she’d actually found. I remember looking at her and I could see her mouth moving but couldn’t make out the words that were coming out. My heart felt like it was about to burst out of my chest and the room felt like it was closing in on me. I heard her say “pouch of fluid on his stomach…it may close up…come back in two weeks”. I left the room in absolute shock and messaged Lex to come straight back up. Five minutes ago we’d been watching him active on the scan. She must have gotten it wrong. I asked to speak with a consultant about the findings. There was no way I was going to be able to go home and cope with that worry for two weeks until my next scan. Lex took Jax home whilst I waited at the early pregnancy unit for 6 hours until a consultant could see me. 6 hours of constant googling. 6 hours of sitting on my own in a room, sobbing. I felt sick with worry. Looking back now, I think deep down, I knew. I kept seeing the words ‘termination’ come up on the pages I was googling and I just couldn’t get my head round it. I couldn’t ‘terminate’ my pregnancy. My baby was alive and kicking. Up until that point, I’d only ever thought baby loss included miscarriage and stillbirth. I never even considered there could be another way which you could lose your baby. Which is why I’m writing this blog, because Termination For Medical Reasons isn’t spoken about enough, barely at all actually, and when you’re the one going through it, that alone is petrifying.
When I finally managed to speak with the consultant after waiting for 6 hours, they told me it could be one of three things. The pouch of fluid they’d found on the scan was indicating the some of Jesse’s organs were outside of his body. Depending on which organs these were, this could likely be treated with operations soon after birth. However, if it was something called Body Stalk Anomaly, this was untreatable and the baby would be deemed “incompatible with life’ but her words were “but this is so rare, we aren’t dealing with this one’. I travelled back home on the tube in a total daze. I remember looking at people who were heading on a night out and wanted to scream at them. They looked so happy and carefree and my world was crumbling. The next day, I booked a private scan at The Portland Hospital in London. They told me Jesse did in fact have Body Stalk Anomaly and even if he did survive the pregnancy, he would die during birth or shortly afterwards. His foot had also started to protrude out of the amniotic sac, putting my health at risk.
Over the next couple of days, we had a number of scans with various consultants from the Fetal Medicine Unit to make sure the diagnosis was correct and to help us decide our next steps. After the final detailed scan, they confirmed the previous findings – that Jesse was so unwell, he would not survive. His left leg was bent up behind his back, he had tumours at the base of his spine and every organ was outside of his body – apart from his heart which had dropped down to his abdomen as there were no other organs to hold it in place. Despite this, it was beating perfectly until the very end. They allowed us an hour long scan where we recorded the heartbeat and filmed his tiny, perfect face. He had the same button nose as Jax! I truly didn’t ever want that scan to end. That was the last time I would see my baby. My boy Jesse. But we could also see the extent of his defect and knew we were making the only decision we felt we could. I was told I could have a medical termination the following week. This is where you are admitted into the hospital, given medication to induce labour and give birth. I was present years earlier when my nephew was born sleeping and I just couldn’t bear to be back in a room where that happened again. I was also warned that the sight of Jesse would not be one I would want to remember. I decided to opt for a surgical termination. The hospital wouldn’t be able to facilitate this for me as they no longer offered surgical terminations so I was sent away with a leaflet for ARC (Antenatal Results & Choices) and one for Marie Stopes Abortion Clinic. And that’s it. I was left to call around and book in my termination myself. I immediately called ARC and spoke to an amazing lady called Jane. The second she answered I just cried down the phone at her, rambling away but she calmed me down and talked me through my choices. I’d never heard of ARC before, but then again I’d never been faced with terminating my much wanted pregnancy before. The work ARC do is invaluable. I’d been trying to search for other stories on TFMR but just couldn’t find any and felt so scared and alone. The second I spoke to ARC, I knew I wasn’t alone, it was just that no-one seemed to talk about it. It was never covered in the media or counted in any baby loss stats. I vowed that as soon as I was through my ordeal and feeling stronger, I would try and change that.
The following day, I set about calling round the Marie Stopes clinics to see where I could get booked in. They found a space for me in a week’s time at a clinic in South London. I was concerned as this procedure wasn’t being performed in a hospital and all of my previous gynaecological surgeries had had one complication or another. I asked what would happen if something unexpected was to happen during the surgery. The lady replied “We’ll call an ambulance and blue light you to the nearest hospital”. That didn’t sit particularly well with me. Next, I asked how I could get my baby’s body back to my hospital as we were having genetic testing performed. She told me, cheerily “We’ll give it to you on the day. But don’t worry, it won’t be in a see through box”. I put the phone down and felt so uneasy, yet felt I really had no choice. The clinic then called me back and said because of my gynaecological history, they weren’t sure they would perform the surgery for me after all. Where did this leave me? Forced into having a medical termination? I fought with the hospital for two weeks and finally, they agreed they would perform the surgery there instead.
The day of the termination was one I will never forget. Just beyond heartbreaking and full of guilt. I sobbed as I was put to sleep and I’ll never forget the anaesthetist crying too. I kept telling the surgical team that I really didn’t want to be doing this but the baby was so poorly. I just wanted them to know that baby was SO loved and wanted. The guilt overtook me that day. The whole procedure was over fairly quickly and I was back home that afternoon. Well, physically it was over but mentally, it was only just beginning. My fortnightly counselling sessions with my Petals counsellor Flora absolutely got me through those early days and weeks. I cried daily for weeks and the first day I woke and didn’t cry, I felt incredibly guilty. TFMR brings such a complex mix of emotions and yet such little support is given by the hospitals and clinics for those going through it.
I kept trying to find out more about TFMR. Kept trying to find more people who had gone through it to speak with. But there just didn’t seem to be very many. Then one day I posted on my social media about what I’d been through and how it is just never spoken about and I was overwhelmed by the amount of messages I received. Literally hundreds and hundreds. Some from women who’d never told anyone but their partners what they’d been through. Some women told me they were so racked with guilt, it was the first thing they thought of when they woke, even years later. One woman told me she felt she was such a poor mum to her other children as the guilt and sadness from her termination ate away at her every single day. I spoke with Tommy’s about this and they invited me to write a blog post for their website. I’d also called and spoken with one of their amazing midwives when I was going through my termination and they’d offered me such support, as they do to so many. I’ve had 3 miscarriages since my termination and they’ve been there for me for every single one. They also do incredible work funding research into miscarriage, premature birth and stillbirth.
Moving forward we have to start including TFMR when we are speaking of baby loss. It was so frightening and isolating going through it and feeling I was the only one. There also needs to be more awareness of how it affects the women, and men, who have experienced it. The grief, the loss, the guilt can feel so very heavy at times. I absolutely wouldn’t have gotten through it without the support of my counsellor Flora from Petals, ARC & Tommy’s and I hope others going through it can find the support they need.