TFMR due to Trisomy 13 after two ectopic pregnancies
Updated: Apr 28, 2021
I had my eyes closed the whole way through the scan through fear. They played the heartbeat, which was fast and loud, then they were silent for over 30 minutes whilst they continued to scan me.
My story starts in 2017. My husband and I had just got married and decided to waste no time trying for a baby. Our daughter arrived on our 10 month wedding anniversary. It was all so easy!
When she was 8-9 months old we decided to try again. I fell pregnant again very quickly but a week later started bleeding. We came to terms with the fact that I was miscarrying, but were shocked and upset to find the pregnancy was ectopic, although thankfully my body was taking care of it naturally.
We waited a few months before trying again, and we didn’t get pregnant the 1st cycle as I had my period…or so I thought. For some reason, 10 days after my period I took a pregnancy test that was blazing positive. I was again sent to the EPU for bloods and a scan, and they called me back in 2 days later on a Sunday afternoon and broke the news that I had another ectopic pregnancy estimated at 7-8 weeks and would require emergency surgery to remove my tube. What I thought had been my period was an abnormal bleed, which is very common in ectopic pregnancies. I won’t go in to details but the handling of these pregnancies by my local hospital was awful, and left me with PTSD and anxiety around early pregnancies.
In spring 2020 I had a HyCoSy scan (Hysterosalpingo Contrast Sonography). to test my remaining tube (all clear – no blockages) and we were given the ok to try again. Around the time my period was due I had some spotting, but a few days later got a positive pregnancy test. I called the EPU at a different hospital as I needed to be treated in a different location and by different staff for my own mental wellbeing. The new hospital was brilliant, they brought me straight in for bloods and a scan due to my previous history of ectopics. Nothing showed up on the scan and my blood HcG level was only 32 but 48 hours later had risen to 87 – a great result, however I was still spotting, and still had extreme anxiety that any niggle, ache or pain was another ectopic.
A scan the following week showed nothing in the womb but a shadow on my tube, and I was scheduled for another scan in 2 days time…still spotting and with overwhelming anxiety and worry. I went back in 2 days later with a packed bag, ready to be admitted for my second ectopic surgery. However they saw a gestational sac…and in the right place! There it was on screen! No ectopic! They brought me back in a week later where they showed me the heartbeat and discharged me from the EPU! Great!
But inside my head it wasn’t great. Despite being relieved of my fear of ectopic, I couldn’t relax. The spotting was on/off, and I booked private scans every week as I couldn’t shake the feeling that something was wrong. The scans would ease my mind for that day, but I was then back to worrying and panicking every time I spotted.
Finally our 12 week scan arrived. I was incredibly nervous, but I shouldn’t be, right? We had gotten over our hurdle which was ectopic pregnancies, surely now that we’ve got to 12 weeks, we’re in the clear? Especially as a close friend had recently had a TFMR, what were the chances that her and I would both have to undergo that in the space of a few months?
My husband wasn’t allowed in the scan building, which is a fetal medicine research centre run by research fellows due to COVID. This means that they are amazing at their jobs, but sometimes lack empathy and human compassion. I had my eyes closed the whole way through the scan through fear. They played the heartbeat, which was fast and loud, then they were silent for over 30 minutes whilst they continued to scan me. I knew that the longer they were silent for, the higher the chances that something was wrong. Eventually they said they wanted a second opinion and were asking a colleague to join. I asked ‘why?’ and was told it was standard procedure, and I then said ‘no it’s not, this wasn’t the case with my daughter, what’s going on?’ She reluctantly told me that she thought the baby had a cleft lip and palate, and problems with its heart.
I texted my husband who was now allowed in with me. By the time he arrived, the consultant had explained to me that they thought the baby had Trisomy 13, Patau’s syndrome, where the chances were that if the baby survived to birth, it would likely live a few days at best. My husband understandably wanted to hear this information from the consultant, but I couldn’t bear to hear it again so was taken to another room. The rest of that day was a blur, the blood test to be sent to America for the harmony test to confirm it, a call from the bereavement midwife on our drive home to talk about my options, and all I wanted was to not be pregnant anymore. I couldn’t understand why they didn’t admit me there and then in to hospital, put me under anaesthetic and take care of it asap.
I had a surgical termination that Sunday, 6 days after our scan. I was lucky – I hear of people waiting much longer. By the time the day arrived I was just ready for it to be over. The procedure itself was fine, and the staff lovely, but I found the emotional impact tough. We’re very private people so only a couple of close friends know about everything, none of our families or wider social groups are aware of anything. I kept a lot of emotion inside, the feelings of loss but also how grossly unfair this all was. I’d had two surgeries that year to end much wanted pregnancies.
*8 months on and I’m 6 weeks pregnant, although I don’t hold out much hope due to the lack of development in each of the 3 scans that I’ve already had. It’s taken my husband and I a long time to get to this point since the TFMR. Afterwards I desperately wanted to be pregnant again whereas he wasn’t sure that he wanted to ever try again. It’s caused some tension between us for sure.
It’s definitely impacted other relationships too, I withdrew from even close friends which I’m still trying to repair, and distanced myself from others who became pregnant, especially those to whom it came easily. The feeling of unfairness still eats away at me, although I feel guilty about that because we do already have a wonderful 2 year old daughter and many don’t.
Some days I can’t believe what we had to go through with that pregnancy, but at the same time it feels completely believable. Whether it was the effect from the constant on-off spotting, the PTSD from the ectopics or mothers intuition, I just never felt like that baby would be coming home with us.
*since being written this TFMR Mama emailed me as she has sadly had another loss and miscarried at 8 weeks. she also wrote the following:
"I also realise that my story may be a bit doom and gloom, especially for anyone stumbling across it that is currently going through the tfmr (Termination for medical reasons) process, But I want them to know that they will be ok. They’re in a storm right now but it will pass, there are brighter days ahead."