Why the policy of losing 3 babies before testing needs to change

We married in 2014 and were not focused on children. It wasn’t until we moved back to England from the US 2 years later that we started to think about it seriously.

I had my first pregnancy in 2017 and, though I was 39, I was very fit so there was no reason to believe age would impact and the hospital didn’t think so. I was excited but trepidatious.

We were at a concert when I felt convinced there was something wrong

It wasn’t rooted in any facts so I tried to calm my nerves but the next day there was mild bleeding and, in my core, I knew something was really wrong.

The following day I had an early scan where we found out, for the first time, we had miscarried. It was so surreal. The nurse was really sweet and I decided on home medical management.

This was my first introduction into the inadequacy of healthcare around pregnancy loss. I felt uninformed about what I would experience which was an intense 5 days on my bathroom floor in extreme pain, bleeding more than I thought humanly possible and very afraid.

I had, what I now understand to have been, a missed miscarriage. 

It turns out our baby had died 6 weeks earlier. Such a sudden and abrupt entry into a side of women’s health too rarely discussed.

We waited some time to try again

I hadn’t been offered testing. I now know about the policy of losing 3 pregnancies before testing and, having done so, it feels such a cruel approach to have to go through these deeply emotional and physical experiences before anyone will investigate.

I was 41 when I had my second miscarriage. With that pregnancy I was withholding my emotions because I knew nothing was guaranteed. Around 7 weeks there was mild bleeding again and I was back at the EPU scanning unit. We were only on the cusp of being able to see a heartbeat so I had to wait a week for conclusive information. Sitting in that space of the unknown was not easy.

We were told the pregnancy had not become viable. Though this was far less physically painful, we were left with the same refrain, it was just bad luck. This feels like a script given to people in pregnancy care units, empty of meaning or medical information.

A friend put us in touch with a private doctor who really listened. He told us there was no reason to believe we wouldn’t have a child which was encouraging.

Still, it was 2019 before we felt ready to try again and it happened faster than expected. I’d been taking progesterone and low dose aspirin from the minute I discovered I was pregnant and by mid-February we went for a scan which came back as ‘high risk’.

I remember being bothered by that, almost as if, by virtue of age, I was ‘high risk’ without taking into account the child inside me but nobody answered my questions.

A private harmony test a couple of weeks later came back normal so we felt relieved. Then, at a 20 week anomaly scan, I felt so dismissed by the doctor. The 30 minute appointment lasted just 8 and he wouldn’t discuss the ‘high risk’ attached to this pregnancy.

We went for another scan at 29 weeks

The sonographer was clearly alarmed by what she discovered. She told us our baby’s limbs were measuring short and booked us in to see a consultant the next day.

After a night of anxiety they told us that, in addition to small limbs, our baby had a series of heart defects. This time I felt they engaged me more in the process of science. A liaison came in to explain our baby would need heart surgery, what this would mean and what the condition would mean for life. Everything pointed towards a chromosomal anomaly but we spent 2 weeks of hell waiting for conclusive information, trying to understand.

Then a very kind geneticist informed us that we were having a daughter and that she had an extremely rare type of trisomy.

At this point TFMR was offered as an option

After much soul searching, we felt that was the kindest, the only thing to do.

Again, I was startled at the lack of meaningful information. I was left looking at normal birthing books and trying to adapt them to our situation which felt so perverse.

The doctor who ended our daughter’s life was robotic and cold, making a painful situation feel isolating and lacking in any kind of compassion or tenderness. 

I tried to understand. Perhaps this was his way of dealing with the situation but there should be resources available so that these people can do their job without impacting on others. Again, it is indicative of the system’s failure, the inability to incorporate compassion and kindness without it feeling like a script.

I did not want to forget the birth because I didn’t know if I would ever give birth again. I did so 5 days after she died, it was an incredibly difficult and surreal experience but I feel that I honoured my baby and I’m glad that I got to meet her. It was a perverse gift.

I was lucky enough to find low-cost counselling soon after the birth, I know many women and their partners do not have those resources available which is shocking. 

We’ve been told that we are not genetic carriers, that it’s just been terribly bad luck. It’s almost like science doesn’t know what to do with us. We are left none the wiser, finding healing in our own way.

I don’t know what another pregnancy will look like and I don’t feel that I am ready to go there just yet.