We only decided to begin trying for a baby in mid-February 2020 and were lucky enough to conceive 2 weeks later. My first trimester was uneventful: no morning sickness, no pregnancy symptoms, apart from exhaustion which I put down to the amount of Pilates I was still doing.
So by the time I went for my first scan at 12 weeks pregnant, I was very positive, expecting everything to be fine – and for the first 5 minutes, everything was. That was until the sonographer became quiet, and finally told me things didn’t look right with the baby.
Worrying symptoms in early pregnancy
The midwife explained there was very high Nuchal Translucency, which can be a red flag for chromosomal or physical abnormalities, but they couldn’t say anything for sure from the scan so I would need to go for other tests to see what could be wrong. I had Chorionic villus sampling (CVS), where they took a sample of the placenta to check for abnormalities.
The doctor who carried out the test explained that we had a 50% chance of a normal pregnancy, so although it was nerve-wracking, we remained optimistic.
A week later, when the results came back all clear for the three most common chromosomal abnormalities, we really had a lot of hope. Since the initial signs were good, we allowed ourselves to be excited again, so then it was an even bigger shock when we got the more detailed test results.
A baby with a devastating diagnosis
Our baby had Koolen de Vries syndrome, a disorder so rare and wide-ranging in its nature that we struggled to really understand what the diagnosis meant – but we continued to research, and thought seriously about how we could take care of a child with these issues.
There wasn’t much information online and the stories we found varied a lot, but they all shared some really life-changing symptoms: slow development, speech issues and even inability to talk, the need for countless surgeries, inability to have children, and serious problems with vital organs like the heart, kidneys and liver.
We saw a geneticist who explained that, as well as this disability, from the high translucency on that first scan she had no doubt they would find additional physical abnormalities at the 20-week scan.
Grieving the decision we didn’t want to make
At this point we also found out that we were expecting a little girl. And despite the fact that we will miss her terribly, we left this appointment certain of what we had to do.
It was the most heartbreaking realisation, because we didn’t feel as though we had any choice; we could never subject our child to so much suffering, despite our own feelings.
Throughout this time and ever since, we have gone through a rollercoaster of emotions, which has made the process a lot more challenging. Some of the most difficult parts of the grief have been not quite knowing what to do next, feeling guilt and anger at what has happened, and the differences in how my husband and I express our pain.
Having used Tommy’s throughout my pregnancy when I wanted expert information and advice, I found pages on their site about support following termination for medical reasons as well as miscarriage. But aside from that, it really struck me how little information is out there, which made me feel less supported when I was first grieving.
Finding support and looking forward after loss
I joined the Tommy’s Support Group and found the shared experiences from other parents in similar positions a huge comfort. Reading their stories reassured me that we could get through this pain in one piece, and it gives you hope to see there are so many people out there who have survived this and gone on to have families. This online baby loss community also helped me with a lot of questions that I couldn’t find answers to anywhere else.
As well as practical and emotional support from Tommy’s, I started getting private counselling, which is really helping me work through some of the grief and guilt I’m feeling about having to make this decision. It’s a very difficult process and I don’t think the guilt will ever go away, but learning to acknowledge the situation and being able to talk to other people has really helped.
Talking about what happened to us has helped me immensely – not just in removing the taboo, but also to help me make her short time with us more “real”.
Posting on my social media pages and writing about our experience have been important parts of the healing process for me, and I would encourage others who have faced this to find the courage to speak up and talk about it too.