By Sabrina Robertson
We had feelings of anticipation and excitement about being pregnant, the same ones many first-time parents have. So we were worried when we went for our first ultrasound and heard there was an abnormality with our child’s heart. He was diagnosed, in utero, with Tetralogy of Fallot, and everything changed from there.
We never thought we would know so much about a human heart.
Our baby was born by scheduled Caesarean section at 38 and a half weeks, weighing six pounds, seven ounces. He was quiet and a little gray in colour.
We were lucky. Zachary was a good baby. He wasn’t fussy and he was meeting certain milestones even though he was smaller for his age.
At three months old, Zach had a Tet spell at home. A few days later, after a scheduled appointment with Cardiology, we were admitted to hospital for observation. Three days later, on my husband’s first Father’s Day, we got a call from BC Children’s Hospital. They were waiting for one of us to sign consent for our son to go in for his first heart surgery. Overnight, his oxygen levels had plunged. Zachary’s first surgery provided a BT shunt to help improve the blood flow into his lungs.
At nine months old, when he was a little bigger and stronger, Zachary had an open-heart surgery to repair the hole between his left and right ventricle and shave some of the thickened muscle in his right ventricle.
After that, the plan was that we would see Cardiology on a yearly basis for regular checkups and again for a pulmonary valve replacement in his teenage years.
However, when Zach was five years old, we noticed that he had started to slow down and he wasn’t quite his usual self. This led us back to Cardiology for an unscheduled visit. We learned from his echo that the outlet from the right ventricle had become obstructed again, making blood pressure in it too high.
Zach needed a second patch repair and another open-heart surgery. Then, at our eight weeks post-op visit, our cardiologist gave us the devastating news that, for a second time, the procedure had failed, and we were back to square one.
After much discussion, the cardiac team decided to place a stent within the obstruction. This would buy some time until Zach’s pulmonary valve replacement. He was eight years old.
Fast-forward and now Zach is 14 years old. In the past year, we have been on an emotional roller coaster, preparing for his next surgery, a valve replacement.
After multiple stress tests and a cardiac MRI, plus a lot of back and forth with Cardiology and the interventionist team, we learned Zach was not an ideal candidate for the less invasive catheter-based procedure. This would have placed a stent-mounted valve through a vein in the groin. It would have been very complex, given the way Zach’s heart sits, the mechanical situation of his existing stent, and the space in his right ventricle.
Instead, we were presented with the option of doing a third open-heart repair in which the existing hardware inside his heart would be cleaned up, the patch would be replaced, and a homograft valve would be placed. This would make him a more suitable candidate in the future for a valve replacement, using the less invasive catheter-based procedure, should he need one.
And now we wait.
While the pressure in Zach’s right ventricle is higher than normal, it is still in a safe zone.
There is hesitation in doing the valve replacement for a 14-year-old boy who is expected to go through a growth spurt. Mainly, there is a chance that Zach’s body could view this valve as something to be turned to bone and calcify it, rendering this next surgery a failure too. So the cardiac team will continue monitoring him to see when he should proceed with that valve replacement, possibly in the next year or two.
And so, this is the incredible journey of our heart warrior.
We wouldn’t be here able to share our story if it wasn’t for the support of CHN. Zach was five years old when we first joined. I would go to some of the monthly coffee meetings and talk with other parents. As a family, we started going to fun events at the water slides, the Vancouver Aquarium, and the pumpkin patch, and having breakfast with Santa. We were fortunate to attend the fishing adventure at Critter Cove in Nootka Sound. I’ve been on the committee for the biannual Growing up with Heart Disease conference. I’m a resource parent and now sit on the CHN board as a member at large.
As Zach got older, we encouraged him to go to Camp Zajac for Heart Beats so he could be with and relate to kids his age that have gone through comparable procedures.
Zach has now graduated to the Hearts of Gold teen group, and in the past year, he joined some of their monthly outings. He has now been to Camp Zajac for two years, and this year, he attended his first HOG camp over the May long weekend.
Thanks to CHN, our family also had the pleasure of hosting the first family camp last September in the Fraser Valley at Camp Stillwood. We had a fun weekend, getting to know each other through crafts, games, rope walks, zip-lining, archery, and rock-wall climbing.
Through opportunities like this, CHN brings complete strangers together, quickly turning them into friends and extended family. It is a place for kids to be kids and to have a sense of normal, away from hospitals and tests. It lets parents give their child a full camp experience, knowing they are in good hands. It connects people who didn’t go to med school and shouldn’t have to know all this heart jargon, but who understand each other because of their similar paths. ♥
“Zachary’s Heart Journey” is from our summer 2019 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.