During pregnancy we did all the screening and tests needed to ensure that everything was fine with Stephan. With both screenings we got a “Low risk” result for any abnormalities. Low risk means 1 in 10 000.
Once Stephan was born André was called to go see him. Our COVID-19 test results came back 10 minutes after I had left the delivery room. After missing the birth, he was obviously extremely excited to see his boy for the first time. But sadly, he was not met with the “congratulations you’re a father” that he expected. Instead, he was bombarded with questions regarding Stephan’s and my medical history.
Was it a healthy pregnancy? Is there any history of Down syndrome in your family? Did you have all the screenings done at the 13- and 20-week pre-natal appointments?
He was overwhelmed and in shock, instead of admiring the perfection of his newborn child, Doctors pointed out various signs of imperfections that might be signs of Down syndrome.
Finally, with our COVID-19 tests being negative we were allowed to see each other for the first time since 3am that morning. André looked worried, and sad. I had assumed it was because he had no idea whether I was okay and the fact that he had just missed one of the most important events of our life. After about 15 minutes a Pediatrician entered the room and started chatting to us about Stephan’s health. He was perfectly healthy but was going to be in ICU for a while as he was born premature. “Then, there’s something else”, she said.
Stephan was born with physical signs that are usually seen in children with Down syndrome.
My heart sank. What? No, you must be mistaken, we had all the tests done, we were told that there is a low risk. It can’t be. This is what was going on in my mind while on the outside I remained completely calm and said nothing more than “okay.”
The doctor started explaining what the signs were that she had noticed, and what it all meant. Honestly, I didn’t hear any of it. I just sat there in bed staring at André and he was staring back at me. And although neither of us said anything, we felt each other saying “It’s okay”.
We were told that further blood tests will be done to confirm the diagnosis. This gave me and André some hope, that means there is still a chance that it could be negative! Later that night when I started getting the feeling back in my legs, I threatened the nearest nurse that if she did not take me to see my son all hell would break loose. I had not seen him at all in theatre, just heard the cry and then they took him away. So, you can imagine how my mama instinct must have been going wild after hearing the news and not being able to see him.
They rolled me over to him in a wheelchair and when I saw my son, I remember thinking to myself “What the hell are these people on about? This boy is perfect!?
The next morning, I asked nicely if they can unplug me from everything and let me see my son, they happily agreed, and I marched my recently operated self to the NICU asap. Our new Pead was there (the other was standing in over the weekend) and she slowly started pointing out what signs there were that could indicate Down syndrome.
I remember feeling very defensive watching her point out his “imperfections”. We were completely blind to the things she was showing us. Extra skin at the back of his neck, a single line in the palm of his hand, a flatter nose bridge, pinky fingers tilting slightly inwards. We remember looking at our own hands, faces and features to try to convince ourselves that he just has a combination of mom and dad’s characteristics.
In the days leading up to the final test results, both André and I felt this calm over us. That everything was just going to be fine. 3 days after Stephan was born it was time for me to leave the hospital. I negotiated with the nurses that I could leave late afternoon rather than first thing in the morning. Being in hospital myself I was allowed to go and see my son any time I wanted to, but you see, because of COVID-19, as soon as I leave the hospital, we would only be allowed to see him for 1 hour each day. (We are on day 20 now, so naturally this means that even though my son is 20 days old, we have not even spent 1 full day with him.)
On day 5 the test results were finally in. It has been confirmed, Stephan was born with Trisomy 21. Down syndrome. I started talking to the Doctor even though I can’t remember a word I said. All I remember is that I was completely calm. I was holding André’s hand at the time and I just remember him moving backwards, finding a chair and sitting down.
The rest of the day was a blur.
I guess when the chances are 1 in 1 000, someone has to be that “1”.