Babies born with Down syndrome often are also born with heart defects. Stephan was born with a Large Ventricular Septal defect.
On the 25th of October 2020, one day after he turned 1 month old, Stephan went in for his first operation. Cardiac surgery in the form of Pulmonary Artery Banding. In simple terms, the Doctors were going to make a 10cm incision down my son’s chest in order to put a silk band around his pulmonary artery to restrict some of the blood flow to his lungs.
The first time we met with the pediatric cardiologist he explained the entire procedure to us. My husband was listening, I was not. I was stuck in a blur of thoughts, including “why did I drop biology in grade 10?” and “a 10cm incision? But he is only 10cm long??”.
It took a fair amount of googling later that evening when everything had settled for me to realize what the good doctor had said. A temporary solution to make him stronger so he can come home.
It was around 6:30am when we received the call to go to the hospital to greet him before going into surgery. They would need a full hour to prep, because it is really difficult to put a drip in a baby who is barely a month old, their veins are so small and really hard to find.
My stomach sank at the idea of this.
We blew our final kisses (as the masks where prohibiting us from actually kissing him) and off he went into theatre.
Two and a half hours.
The wait was nothing like you see in the movies. There was no pacing up and down, no one brought us coffee, we weren’t sitting there freaking out and crying hysterically. Instead, it was dead silent. André and I hardly spoke a word. We just kept staring at our watches every 5 minutes or so. We occasionally went outside so that André could have a smoke and I could pump out milk for Stephan. That’s right, your boobs don’t give you a break when things get tough, in fact, in my case they produced more the more I knew he needed my milk.
Eventually the wait was over, and we were called to meet the Doctors in CTICU, Stephan was out of theatre. He was still sedated when we got there, and he would continue to be sedated for the next 12 days. If I had known this sooner, I would have taken a million videos of him awake and happy.
The next 12 days were hell. We had to take turns visiting him as the CTICU would only allow 1 parent for 1 hour per day. I missed him more than I can explain. I would give anything to see his baby blue eyes, see that he is awake, and hope that he is happy and okay.
On day 13 I came around the corner to enter his room and there they were. Stephan was awake and responsive, and it felt like he was staring right into my soul, eyes wide open. I broke down, the nurse kept assuring me that he is okay and that everything is fine. I knew this of course. I was just so happy to see him, to see his eyes move towards my face when I spoke to him. This was everything to me.