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 […]
After finding out that Stephan is going to need surgery to temporarily help his heart heal as much as it can, we had to start planning the “Groot trek” (big move). The Doctors who are able to perform Stephan’s surgery are based at a different hospital which means that he needs to be transferred via […]
From the first day Stephan was born I started expressing breastmilk for him. Being born at 35 weeks, his cheek muscles and sucking reflex was not fully developed at birth, so it would take a while for him to be able to feed on his own. Pair that with the low muscle tone that comes […]
On the 29th of October we received the confirmed diagnosis of Down syndrome for Stephan. Naturally we were devastated at first. Neither of us had ever known anyone with Down syndrome, never known any parents with Children that have Down syndrome. We were already feeling quite isolated in our parenting journey as we don’t have […]
Once André and I were told that the Down syndrome diagnosis was confirmed we were kind of left in a spin. Are we ready to tell everyone? Who would we tell first? What do we even tell them? I think the last question hit the hardest, we would obviously tell them Stephan was diagnosed at […]
The day after we received the test results, we made an appointment with a dear friend of ours who happens to be the pastor that married us. I reached out to her the previous day feeling completely overwhelmed and alone. Until this point we had not told anyone that Stephan has Down syndrome, let alone […]
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 […]
This might seem ridiculous to you but I asked this question a thousand times. I asked friends, I asked family, I asked my Gynecologist and of course I asked Google multiple times around 3am in the morning when my pregnancy paranoia was at it’s peak. The answer was always the exact same: a burst of […]
