Henry is a happy five-month-old who is hopefully young enough that he won't remember how he spent the first 4.5 months of his life. As early as his 16-week ultrasound the doctor could see that he had a hole in his heart. With his Down Syndrome diagnosis, it was too early to know what it would mean until further along in the pregnancy and the heart had more time to grow. Henry was diagnosed with a Complete AVSD or Atrioventricular Septal Defect, which means that he had a hole between the right and left chambers of his heart and the valves had also formed into one valve rather than separate valves. As every child is different, there was no way of knowing how this would impact him at birth. Henry’s growth was monitored on a regular basis, and any stress signals. During his pregnancy, it was difficult to know what battles lay ahead for him in the first couple months of his life.
At 38 weeks it was determined that Henry was showing signs of stress, and it was time for him to start his journey. Surrounded by the incredible medical support of McMaster University Children’s Hospital, Henry was born on June 2, 2024. Henry adjusted to being in the world, and found that his lungs weren’t quite ready for the challenge. He was put on oxygen support by his second day. It was hard to tell what this would mean for him long term, but within the first two weeks his body was starting to show signs of congestive heart failure, and medication was required to help push excess fluid from his little body. It was difficult to watch him struggle. While the pre-natal planning had provided a tentative prognosis of what to expect, I had not anticipated that Henry would remain at McMaster for almost five months! During that time Henry remained on the ventilator around the clock, he had multiple UTIs, COVID19, and countless sleepless and fretful nights. Adding to his hurdles, Henry has not had the strength to drink milk on his own. Increasingly, since the surgery, he has been drinking from the bottle, supplemented by nutritious milk fed through the tube.
Henrys heart surgery date was pushed back multiple times due to his chronic UTIs, elevated temperatures and concerns over him having necrotizing enterocolitis (NEC). The month-long wait was difficult since it was clear that Henrys heart was ready to be repaired. Henry took a vacation from McMaster in August when the medical team shuttled him down the 403/QEW/Gardiner to Toronto’s Hospital for Sick Kids. Henry joined the so-called zipper club when Dr. Osami Honjo opened his heart up and performed the complex AVSD Repair that would allow Henry to breathe deeply without the need for a ventilator. He was a new boy after that! Gratitude simply does not do justice to how me and my family felt towards the surgeon and his team. Thank you!
After Henrys heart surgery, he was slowly weaned off oxygen support over the next couple of weeks. It felt so good to come in one morning to see that it was gone. He was able to breathe on his own for a couple of days before COVID-19 put him back on oxygen support for the next couple of weeks. After this he has been on and off oxygen until it was decided that it could no longer be COVID, and he was seen by a Respirologist who determined that he had Preemie Lungs
Henry spent nearly five months in NICU and PICU at McMaster. His Grandma and I moved into the Ronald McDonald House next door. We entered a world of care, concern, and compassion. Those characteristics sustained us as the plethora of machines and incredibly busy nurses and doctors went about their craft.
Henry is home in Guelph now. He continues to be tube fed as supplement to the bottle and the oxygen tank is never far away.
Henry will not remember any of this. Our stories of love and hope will however become a part of “remember where you came from”, a saying that his 97-year-old Oma is fond of saying.
-Henry's Mom
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