Amelia was born by elected cesarean, due to her being a breech baby and she was quickly whisked away from us before I even got a cuddle her. This was due to her having low oxygen levels at birth. It was a few hours later that Amelia’s dad was presented with the news that the doctors suspected Amelia had Down syndrome, he then had the job of coming back to see me and to tell me the news.
Amelia’s pediatrician didn’t come up to talk to us both together until a lot later in the evening. My initial reaction to Michael telling me was just shock, and I apologized to him.
A lot.
I felt it was my fault, that I had failed her somehow whilst being pregnant. Then by the time her doctor had come up to speak to me, my feelings had turned to anger, and I quickly dismissed her from talking to me about it. It took a few days and a lot of cuddles from my princess and talks with her dad to realize how ridiculous I was being. I work with children and adults with various disabilities, some who have Down syndrome; and I’ve seen how amazing their lives are – I didn’t need to be upset or angry, I needed to be proud of her and I was!
It was once we got home from our three-week stay in hospital that I could look at Amelia and see a baby, not a baby who has Down syndrome. I think it took me this long as everything was focused on Amelia’s diagnosis whilst we were in the hospital; once we were home I had my baby, not a Down syndrome baby.
Once we were told Amelia’s diagnosis was confirmed, we were bombarded with doctors telling us all the negatives, all the health issues, and all the developmental delays that we would face from the beginning.
This was a major concern for me, and something I struggled with I again began to feel guilty. Had I done something
when pregnant that gave my little girl health complications? It turns out again I was being ridiculous. Amelia has no other health conditions and she keeps up well with her milestones, proving her pediatrician wrong each and every time.
Amelia’s dad, Michael, has been the best support I could ever ask for. He never let me see him get upset or stressed, he was more interested in making sure Amelia and myself were okay – he was the positivity that we both needed to get us through those initial days, to get us past the sadness, guilt, and anger. It wasn’t until later he admitted he had gone and had a cry in the car by himself.
Having Amelia has made us be more honest with each other, more open about our feelings. We realized early on that this is how we need to be; if one of us is having an off day and we’re concerned about anything the other quickly picks us back up.
Our family and friends have been amazing since day one. It was obviously a shock to all, but once all understood what Down syndrome is it became a lot easier for them. It’s made it easier by them all feeling able to ask the questions they need to. Open communication is definitely the key!
Amelia is now six months old; she rolls over, sits unassisted, enjoys playing with anything that lights up and makes a noise, she loves her food and is desperate to be on the go.
I don’t think it really matters when you find out that your little one has Down syndrome, the grief is something that everyone will have to go through no matter when you find out; and for us it wouldn’t have mattered if we had a prenatal diagnosis. The only thing that could change the response would be how the doctors communicate with parents; the focus needs to come away from just talking about the health and development issues; and bring in the positives, change the language used (Down syndrome is not a problem), and offer all the available support that there is out there!
Hi. My name is Kirsty, I am a first time mummy to my amazing Amelia-Rae and living in Berkshire, England. I decided to start sharing Amelia’s story on Instagram @rae_oft21 after reading reports on hopes to eradicate Down syndrome through new testing; and realized that us DS mummies need all the help we can get to spread awareness about how amazing our little ones are. As much as I’m all for prenatal testing, I think people need to be more informed about what the future would hold for them to be able to make an informed decision before deciding to abort their baby.
I definitely agree that doctors need to change the way they communicate a diagnosis to parents. Though I believe a lot of that change will come from all the work that parents are doing sharing their stories about how wonderful their babies, like Amelia, are.
She’s a beautiful little girl!