Izaiah’s Story

By Stefanie Schilling

Looking at this smiling, 11-year-old boy, with his swept-to-the-side long hair, you would never guess the turbulent start he had in this world and what it has meant for us to be connected to the Children’s Heart Network during this time. Izaiah Sergioneo Schilling-Regala was born on November 30, 2007, at BC Women’s Hospital in Vancouver. There were no complications during the pregnancy or during his birth, but our doctor, Dr. Ferguson, did detect a heart murmur.

It was still present a day later and Dr. Ferguson explained that one in 100 newborns have heart murmurs, but only one in 10 of these need heart surgeries.

Izaiah fell in that one in 10. The murmur hadn’t been diagnosed in utero because it was only noticeable once Izaiah started breathing on his own. At less than a week old, he was diagnosed with a ventricular septal defect, an atrial septal defect, and a coarctation of the aorta. Izaiah was admitted to the cardiac ward and a week later, he underwent open-heart surgery. My wife Stefanie and I stayed with him round-the-clock the whole week until they sent us home after his operation.

I remember it was not long after we left the hospital when we got one of the worst phone calls a parent can get. To this day, seeing a call display showing the number of the hospital traumatizes me. We will never forget the nurse’s voice. It was grave and monotone and she said we had to return immediately.

Hours after his surgery, Izaiah wasn’t doing well. Our cardiac surgeon, Dr. Campbell, got back to the hospital just as Izaiah’s heart stopped. Dr. Campbell physically pumped Izaiah’s heart with his hands for 15 minutes and then put him on ECMO (extracorporeal membrane oxygenation). ECMO involves a pump that circulates blood through an artificial lung and then back into the bloodstream, essentially “heart-lung bypass” outside the baby’s body.

Two weeks later, Izaiah was stronger and was taken off ECMO. The next five months were like a roller coaster ride for us as Izaiah moved between the ICU and the cardiac ward to address various respiratory distresses. BC Children’s Hospital became our home. The caregivers were like our family. This is also when we first connected with the Children’s Heart Network (CHN). Eventually, through CHN’s Coffee Groups, Stefanie connected with many parents of children with various heart conditions. She would go on to attend CHN Coffee Groups in Richmond and later, she started a group in Vancouver and became a resource parent.

In September 2009, Izaiah had his second heart surgery to widen his aorta. They were able to do this one without opening up his chest. His aorta was so weak he had to be put into a medically induced coma for a week to keep his blood pressure low in order for scar tissue to build and strengthen it.

In January 2014, he had another open heart surgery to repair an obstruction in his lower ventricle outflow tract and to widen an area near his aortic valve. Shortly after this, the doctors performed another surgery to adjust and correct the outcome of the initial one.

Perhaps because Izaiah had been bedridden, with very little physical activity for a long time, his feet and ankles didn’t develop properly. This meant that he walked on his tippy toes, his heels not hitting the ground. In February 2016, after trying other surgery with little success, Izaiah underwent a massive reconstruction of both his feet and ankles. His doctor, Dr. Alvarez, extended his foot tendons by transplanting his upper leg tendons. Izaiah spent six months in recovery. He couldn’t walk for almost three of those and was confined to a wheelchair. I am forever empathetic to people who use wheelchairs long term and am thankful that Izaiah’s time in one was only a brief stint. In the end, it was more than worth it because Izaiah loves to play basketball, and after the extension, he was able to fully plant his foot on the ground and shuffle with balance.

In January 2018, Izaiah was diagnosed with five non-cancerous tumours on his right hand. All I could think of when they were testing them was that memory from his first days as a baby when the doctor told us that only one in 10 babies with a murmur will need heart surgery. Thankfully, they ended up being benign and Izaiah spent about six months recovering from their removal.

Which brings us to today. There is a neonatal follow-up program that tracks children who were put on ECMO (infant life support) and we continue to see the doctors there every four years or so. Recently, we went to see them so they could measure Izaiah’s lung capacity. It turned out to be Dr. Seear who was on duty for our check-up. We hadn’t seen him for so long. He was the doctor, who, almost 10 years ago, told us, in the ICU, that Izaiah might not make it through the night. He was also there for us when Izaiah was able to leave the hospital five months later. It was an emotional moment when Dr. Seear recognized and called out Izaiah’s name and saw him, now a healthy and active 11-year-old boy. We all felt so very blessed and thankful when Dr. Seear reported Izaiah had 70 percent lung capacity, an excellent level, considering his medical history.

Some days I get frustrated with Izaiah because he’s a preteen boy; however, then I remember those times when I just wanted him to make it through the night.

Through all of this, we have found support and camaraderie through the CHN. One of Izaiah’s best friends is a fellow heart kid and he always looks forward to attending events with him. It is a great way to connect with families who have had similar experiences. ♥

“Izaiah’s Story” is from our winter 2019 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.