My Baby Was Diagnosed with Down’s syndrome after Birth

by Liberty 

Liberty’s son Ellis was diagnosed with Down’s syndrome after birth. He is now a beautiful five month old; this is what she wants other parents to know.

Following a termination for medical reasons in the summer of 2020 and a subsequent miscarriage, I was desperate for a healthy pregnancy by the time I was carrying Ellis.

Constant anxiety aside, my third pregnancy seemed straight forward. The 12 week and 20 week scans showed nothing abnormal and I started to relax; I even allowed myself to decorate the nursery! At 27 weeks  we had a private 4D scan which revealed that our baby boy had something called Duodenal atresia, also known as ‘double bubble’.  This meant that his stomach had a blockage and he would need to be operated on at birth.  

1 in 3 babies who have double bubble also have Down’s syndrome. We paid for the non-invasive testing (NIPT) to try and prepare ourselves. The results came back showing a low risk so even though I was worried about the operation he was going to need, I felt positive and focused on looking forward to meeting him.

I was induced at 37 weeks and Ellis was born by emergency C-section. He was taken to the NICU where a Consultant told us they had noticed soft markers for Down’s syndrome including sandal toe (a gap between his big toe and adjoining toe) and a palmar crease (he has one line on the palm of his hand rather than two).  

I was in shock after our NIPT results had shown him to be low risk – I hadn’t considered that he could be diagnosed with Down’s syndrome after birth but also just so relieved that he was here, alive, that I didn’t really process what they were saying.

Ellis went on to have his surgery at just 2 days old and whilst his surgery went well, he had to be resuscitated afterwards. I remember the surgeons seemed so shaken up that it made me realise just how lucky we were that he was OK. The next day the blood tests came back confirming that Ellis has Down Syndrome.

I broke down. We were in that room that you’re taken to for bad news and I couldn’t understand how this straightforward pregnancy had yet again turned to heartbreak.  I cried for him but selfishly, I also cried for us. This wasn’t the way I had imagined it.  How was it fair that we had been through so much pain and now had a Down’s syndrome diagnosis to navigate too?

“He is still a baby and just needs you to love him”.

I would see friends with newborns and feel jealous that their babies were ‘normal’.  I couldn’t enjoy those first few months because I was mourning the baby I thought I was going to have and worrying about what life would be like now.

My Nan said to me, “He is still a baby and just needs you to love him”.  It was the most simple thing for her to say but something I’ll always remember.

Here’s what I’d like other mums to know after being diagnosed with Down’s syndrome

• Initially just focus on the fact that this is your baby and all they need is your love.

• Once you’re ready, join a local Down Syndrome group.  We go to one near us and there is always someone for me to talk to if I’m in need.  They also offer early intervention groups which are so helpful for the baby’s development.

• Go to baby groups! I was scared we wouldn’t fit in. Getting yourself out there will help you realise that people aren’t as judgemental as you think they might be. Ellis loves baby sensory and swimming just as much as any other baby might.

• Talk through things with your partner.  Having a diagnosis can be daunting and hard on a relationship. Attend appointments together (or online workshops during the pandemic) so that you can both learn as much as possible.

• Once your baby’s personality develops it will get so much easier. You won’t see them as their diagnosis. Sometimes, I can no longer even see that Ellis has Down Syndrome. To me, he is just our Ellis.

At the start there were a lot of appointments and lots of information thrown at us but it did get better. Ellis has been in our lives for just 5 short months and he’s made every painful moment worth it.

I have a wish for Ellis’ future. I want to ask all parents to teach their children to be inclusive and kind to others, especially those that are a little bit different. One of the hardest things is worrying about how people will treat Ellis. I am determined to ensure he grows up knowing he has just as much right to his place in this world as anyone else.

When you’re pregnant, all you really want is for a happy baby to love and to raise. A baby with Down’s syndrome is just that.