“At one point when we weren’t sure if our baby would survive Ross told me he’d be devastated by the loss but also because we would likely never have the chance to raise a child with Down syndrome again.”
A dark and cold early November morning myself and Ross were walking the dogs before work. We both saw the same shooting star burn across the sky and we both made a wish to ourselves. After 6 months of trying for our much wanted baby, we finally fell pregnant in November 2020. It was during the heaviest covid restrictions and everywhere was in lockdown. We were overjoyed and decided to tell our families at Christmas when I was 8 weeks pregnant. I was working full time as a nurse and we discussed that it would be safer for me to quit as covid cases were rising and the busy ward I was working on was starting to feel like an unsafe place for our unborn baby.
Due to covid restrictions I had to attend the 12 week scan alone while Ross waited in the car. The sonographer was very thorough and found delight in my reaction to seeing our tiny human on the screen. I was crying and kept saying “I can’t believe there’s someone in there”.
This being my first pregnancy, I didn’t pay any attention to the length of time and the amount of measurements the sonographer was taking, but eventually she said that there were some concerning findings with the baby. I was still on a high after seeing the little miracle we had created for the first time. She explained that the baby had extra fluid (cystic hygroma and later hydrops fetalis) where it shouldn’t, and that this could mean a few different things. One reason could be an infection, sometimes one you get from cats (we have two), another is a virus you can get from a child who had Scarlett fever. The other reason she explained could be that the baby has a “chromosomal abnormality”- a term I’ve grown to dislike as I now understand and appreciate the beauty in “different”. It was hard to hear this information on my own and have to relay everything to Ross who was waiting in the car.
We had an amniocentesis at 15 weeks and 4 days later we learned our baby girl had Trisomy 21 (Down syndrome). At 19 weeks we had our first fetal echocardiogram (echo) and learned the devastating news that our baby had an extremely complex set of heart defects. Despite all the new information, at this point with all of the uncertainty, we were just so happy to have a diagnosis and a cause for the fluid and heart defect. Around 50% of babies born with Down syndrome will have some form of heart defect compared to 1% of typical newborns.
Thar first fetal echo was very emotionally difficult, due to the complexities of our baby’s heart defect they weren’t sure if they were going to be able to offer surgery. We felt drained and hit our lowest point, despite being so positive up until now. It felt like the most painful waiting game that we very well might lose. At one point when we weren’t sure if our baby would survive Ross told me he’d be devastated by the loss but also because we would likely never have the chance to raise a child with Down syndrome again.
In Ireland abortion has recently been legalised and terminations are offered under certain circumstances. Down syndrome is not one but coupled with a heart defect, it can be offered. Our consultant mentioned it to us but we made it very clear we wanted to continue the pregnancy no matter what. We had multiple scans over the coming weeks and at each one she proved to us and the doctors that she was putting up her best fight. We are now at 37.5 weeks and the countdown is on to meet her. We won’t know what kind of support or surgeries she’ll need but we will take each step at a time as we have done the whole way through this incredible rollercoaster journey. The DS diagnosis has never been an issue for us, in fact we truly felt blessed to have this opportunity and we had wished for this baby so much, nothing was going to change our feelings towards her – our daughter.
