‘He has no chance of surviving.’ There was fluid around his heart, lungs, and brain. They didn’t believe the pregnancy was viable, but he was SO loved already.’: Mom births baby with Down syndrome

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“In the summer of 2016, I was pregnant with my second child. The pregnancy with my daughter had been straightforward, so I’d assumed it would be our experience again. We went along to our 12-week scan excited to see our baby. I didn’t put much thought into consenting to the screening, as I just thought it was what you do in pregnancy. My husband and I have always said we wouldn’t terminate a pregnancy, even if anything was detected.

After the scan, we were called into what I call ‘the bad news room.’ We were told, ‘There is a 1/29 chance of your baby having Trisomy 21 (Down syndrome).’ We were offered a termination, a more accurate screening that cost around $550, a diagnostic CVS test, or to just carry on as normal. At this point, we chose to carry on as normal. They also mentioned, ‘Your Papp-A, a pregnancy growth hormone, is extremely low. It’s 0.08 and should be above 0.3.’ I was given aspirin to take and told I would have additional growth scans throughout the pregnancy. I started to feel him kicking at around 16 weeks, which I hoped was a good sign, and we started to bond with him.

By the time we came to our 20-week anatomy scan, I’d put the thought of Down syndrome at the back of my mind. The scan wasn’t the happy experience we had been through before with our eldest. Instead, we were told, ‘He has something called Fetal Hydrops, which is a buildup of fluid in two or more areas of the body.’ Zephy had fluid around his heart, lungs, and brain.

We were advised to terminate the pregnancy, as they didn’t believe it to be viable. They said, ‘He really has no chance of surviving.’ We had always said we would not have an amniocentesis due to the risk of miscarriage, but when faced with the news we were given, we wanted to know everything we could about him and what was going on, with the hope of treatment options. We went ahead with an amniocentesis.

Courtesy of Sarah Ojar

It wasn’t a comfortable procedure, and I was terrified of having a miscarriage. I rested as much as I could in the days after while awaiting the results. I remember getting the call on a Friday afternoon. They told me, ‘Your baby definitely has Down syndrome. Do you want to terminate the pregnancy?’ I told them I didn’t. As a family, we went through a range of emotions from disbelief and denial, to anger and pain, and finally to acceptance and hope. Our families were so supportive, and he was so loved and accepted from before he was even born.

At this point we still didn’t know if he was going to make it, and we had a really worrying few weeks keeping an eye on the fluid and hoping and praying it would resolve. It did. After 4-6 weeks, we got our miracle and a scan confirmed the fluid had all gone, which would allow his organs to continue to grow and develop as they should. During this time, his diagnosis of Down syndrome took a backseat and became somewhat irrelevant. Once we knew he was going to make it, we tried to prepare ourselves for what might lie ahead. We sadly did not get a lot of support from the hospital. I found the rest of my pregnancy quite a lonely and daunting experience. We shared our news with some people, but a lot of people didn’t know.

Courtesy of Sarah Ojar

He was eventually born very healthy, the day after Christmas, after I was rushed in on Christmas Day to be induced. I had been diagnosed with gestational diabetes at 16 weeks so they wanted to deliver early, partly because of this and partly because they could see my placenta was starting to fail, which can happen in a trisomic pregnancy. I also developed obstetric cholestasis in the last few days, so I was very itchy. He spent two weeks in the hospital in the special care baby unit, as he was so sleepy. We were there over New Year’s Eve and got to watch the big firework display in London.

Courtesy of Sarah Ojar

At the time, we knew nothing about Down syndrome, other than it meant he had an extra chromosome and may have some developmental delays. We had no idea what raising a baby with additional needs would be like. We had one friend with a child with Down syndrome, who I reached out to during my pregnancy for advice and information, and she connected me to the right groups and support.

Over time, we found lots of things were the same and some things were different. There were easy times and challenging times in the beginning. We have been very blessed. Zephy does not have any of the clinical conditions which can often present in a child with Down syndrome, so we haven’t had surgeries or serious illnesses to contend with, which has made a big difference to his development and overall health.

Courtesy of Sarah Ojar

The first four months were very challenging, finding our feet with services and finding support groups, and understanding what his diagnosis meant for him and us. We entered a whole new world as parents of a child with additional needs. We discovered an amazing community of families, just waiting to welcome us in and take us under their wings. I worried about a lot of things I wouldn’t able to do with him, such as breastfeeding, but when the time came for there were no problems at all. He even got signed to a modeling agency here in London and has done a baby food advert and some fab Down syndrome awareness campaigns.

Courtesy of Sarah Ojar

Life became a whirlwind of appointments and therapies. We are very lucky in London to have access to some fantastic charities which provide specialist therapy for children with Down syndrome. They focus on speech and communication with some physio and occupational therapy. Most of Zephy’s medical appointments are just precautionary. They keep a close look at his hearing and eyesight, and he sees a community pediatrician once a year.

Courtesy of Sarah Ojar

When Zephy was 18 months old, we decided to try for a third baby. We fell pregnant quite quickly and got the shock of our lives to find out we were having identical twins. As well as being ridiculously excited and happy, we were also worried what the impact would be on Zephy and our older daughter, and how we would cope, but it’s been amazing. It’s a challenge at times, but seeing Zephy grow into the wonderful big brother he is has been completely worth it.

Dinky Days Photography

Zephy turns four this year, and watching him grow from a toddler into a little boy this year has been a blessing. I’m really excited to see what the future has in store for him. For anyone who finds themselves in a similar situation or has a postnatal diagnosis, I want to encourage you. I want you to know there is a wonderful community out there waiting with open arms to help you navigate practically and emotionally.

Life is nowhere near as scary as I thought it might be. In fact, it’s not scary at all. It’s full of joy, wonder, amazement, and love. Down syndrome is not something we specifically think about every day. It’s everywhere, like the air we breathe, but not something we continuously focus on. I’m so excited to see what his future holds.”

Dinky Days Photography

This story was submitted to Love What Matters by Sarah Ojar from London, UK. You can follow her journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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