Henry

Henry was born on September 2nd, 2019 after what we believed to be a perfectly typical, healthy pregnancy. In the hours that followed his birth my husband and I began to notice that our little boy seemed to have some features of Down syndrome. We asked some of the health care professionals on the maternity ward and were assured that he didn't appear to have an extra chromosome... but something just wasn't sitting right with us. We asked for the NICU team to come up and assess him and within an hour he was clinically diagnosed with Down syndrome.

The following day we learned that he was also born with a heart defect called AVSD. Henry's heart had 3 massive holes in it and had only 1 intake valve (a typical heart has 2) and would require surgical correction within the first 6 months of his life. After a 9 day stay in the NICU we were able to bring our son home and begin to adapt to a life that suddenly included lots of doctors appointments, therapies, and long nights spent researching Down syndrome and worrying about what the future would look like. In those first few days, weeks and months it seemed as though life would never feel "normal" again... but bit by bit, we fell into a comfortable routine. As we learned more about Down syndrome and connected with dozens of families that include someone who has an extra 21st chromosome we began to feel less fearful of the future and more excited about what it may hold. We felt hopeful and optimistic, but we still had a very big hurdle to overcome: open heart surgery.

On February 28th, 2020 Henry underwent heart surgery at the Stollery Children's Hospital in Edmonton. I'll never forget the moment that I had to hand him over to a nurse to be brought into the operating room or what it felt like to see my baby unconscious and strapped to a hospital bed with what seemed like an endless tangle of cords, tubes and wires coming out of him. His heart had been repaired, but mine broke over and over again in the days leading up to and following his surgery. Henry's post-op healing was a true roller coaster. We'd take two steps forward and they would immediately be followed up by one step (if not two or three) back. He went into cardiac arrest 5 times over the course of two days and required chest compressions to get his heart to resume beating. We were in the room for multiple of these episodes and it will forever be one of the worst things I have ever experienced. I've never felt more helpless than I did standing in the corner of a hospital room filled with doctors and nurses surrounding my baby, listening to the monitors shriek as his heart stopped. Slowly but surely things took a positive turn and after a very long 15 days in hospital we were able to bring Henry back home. After over 6 months of holding our breath hoping our little boy would survive open heart surgery, Tylor and I were finally able to exhale. It felt like a page had finally turned and we were able to begin the next chapter of our lives.