MEET OUR HERO: JONATHAN
Condition: Hypoplastic left heart syndrome
No mother imagines that within the first few minutes of giving birth, she will have to hand her baby over to nurses to be rushed to a children’s hospital. That is what happened to Christyne when she delivered her son, Jonathan. His heart condition, discovered in utero, made it crucial for him to be transported to The Hospital for Sick Children (SickKids) right away.
Jonathan suffers from hypoplastic left heart syndrome, a condition that leaves the left side of the heart severely underdeveloped. He was born without a left ventricle, which causes major difficultly in the flow of blood from his heart to the rest of his body. Although this congenital heart defect cannot be entirely cured, patients can undergo a series of surgeries or a heart transplant.
At three days old, Jonathan underwent his first openheart surgery. Surgeons poked a hole in the top atria of his tiny heart, allowing the right ventricle to function as a replacement for the left ventricle and pump blood for both the lungs and the body. At first, Jonathan’s heart didn’t react well to having a wire in such close proximity; his heart rate dropped and his parents nearly lost him. His second surgery, at six months, was textbook but Jonathan’s recovery time took longer than most. Generally patients who have this surgery are out of the Critical Care Unit (CCU) by day five; Jonathan took 21 days to fully recover before being transferred to the ward.
Jonathan has successfully had all three surgeries to repair his heart. He underwent his third surgery in November 2007. Again, his surgery was textbook, but his recovery took longer than expected. He spent 17 days in the hospital and went home on a fat free diet to treat chylothorax. That year, there was a fat free Christmas dinner in Jonathan’s house.
Jonathan is now in grade six and enjoys his days filled with things 12-year-old boys love – playing outside with his friends, playing video games and attending summer camp. Jonathan attends Camp Oki, Canada’s first Summer Camp for children with congenital heart disease.
Children with heart disease can be ‘shut out’ of mainstream summer camps due to misinformation or lack of confidence. Camp Oki provides kids like Jonathan a safe, fun camp experience.
“ You get connected in the hospital. It’s like one big family of people who are there to get well or people who are doing their best for who they’ve got in the hospital. Strangers become friends and everyone leans on each other.” Christyne, Jonathan’s mother.
Condition: ALCAPA (Anomalous Left Coronary Artery arising from the Pulmonary Artery)
For those who don’t know Jaidyn, they would never guess she was born with a heart defect. She is constantly active, playing soccer, competitive figure skating and participating in her favourite outdoor activities at Camp Oki. But those who know Jaidyn well know that she is a patient of The Labatt Family Heart Centre at The Hospital for Sick Children (SickKids).
Jaidyn was born with an extremely rare heart defect called ALCAPA (Anomalous Left Coronary Artery arising from the Pulmonary Artery), which means her coronary artery was connected to the pulmonary artery instead of her aorta.
On November 25, 2002, Jaidyn was born a happy and what was thought to be a healthy baby. Within the first few months of her life she visited her local hospital twice and was put on oxygen because of her difficulties breathing. Three months later, after a doctor detected a heart murmur, Jaidyn was referred to SickKids.
Upon her arrival, Jaidyn’s mom, Michelle, knew they were in safe hands. An echocardiogram led her healthcare team to the diagnosis, ALCAPA. She was admitted on February 15 and underwent open heart surgery on February 20 at less than three-months-old.
Each year, 1 in 100 babies is born with a heart defect. SickKids performs more than 85 percent of paediatric cardiovascular surgery in Ontario. Jaidyn successfully recovered from the surgery and has been monitored at SickKids ever since.
Jaidyn spends one week of each summer at Camp Oki, Canada’s first Summer Camp for children with congenital heart disease. Staffed by doctors, nurses and counselors, this is where Jaidyn has met some of her best friends.
“ Jaidyn and two friends have developed this amazing friendship at Camp Oki that I’m sure will last a lifetime. They met a few years ago and have been privileged enough to bunk together for the last few summers. These three girls are in constant communication. Whether it is phone calls, text messages or through Instagram not many days pass by without them being in contact with each other.” Michelle, Jaidyn’s mom.
Condition: Aortic and mitral valves stenosis with a coarctation (or narrowing) of the aorta
David was born with a congenital heart disease (CHD); specifically aortic and mitral valves stenosis with a coarctation (or narrowing) of the aorta. At ten months old, his parents learned he had to receive open heart surgery at SickKids. This was necessary to stop the narrowing of his aorta to ease his little heart’s job in distributing fresh blood throughout the rest of his growing body.
While the surgery was successful, David’s life was always different. In the small town where he lived, noone else had a CHD and athletics were mainstay, whereas constant medical checkups and the monitoring of physical activity followed David his entire life. David’s favourite sport was hockey and he was able to be a goalie, but any more than that would be too much of a risk to his heart. The narrowing of his aorta could start to reoccur at any moment.
Attending SickKids’ Camp Oki each summer cured David of any feelings of stigmatization, and gave him a sense of belonging and identity, as well as the confidence to be a leader. David says, “OKI has made me stronger mentally and emotionally when it comes to understanding who I am and what I can do, even with a congenital heart defect.”
David’s allegiance to Camp Oki has continued throughout his lifetime. He started as a camper, moved up to the Leadership-In-Training program and is now a camp counsellor. Each summer, he listens to young campers’ stories and shares his own story with them so they know they are not alone. His favourite part of being a counsellor at Oki is seeing campers challenge themselves and succeed in an environment, perfectly equipped to handle every medical challenge they might face.
Children with heart disease can be ‘shut out’ of mainstream summer camps due to misinformation or fear surrounding how the camp might deal with medical challenges that could arise. Camp Oki provides kids like young David a safe, fun camp experience where they make friendships that last a lifetime. It is the first and only camp of its kind in Canada, fully equipped to deal with virtually any medical challenge kids with CHD might face.
The physical safety Camp Oki provides comes second to what it does for children with CHD developmentally and emotionally. The stigmatization that can occur with CHD can lead to mental health problems and Camp Oki prevents this. “OKI is a welcoming place where you can be you; you don’t have to worry about people judging you for your scar,” says David. “Your scar is now a proof you survived, a story that all want to hear.”
Brooke Frankland, Emily Mock, Deirdre McIntosh
“Sent my girl off to her final year at Camp Oki – Canada’s first summer day camp for children with Congenital Heart Diseases. We say these kids have “special hearts”. This is where she’s found confidence and friends who can truly relate to the challenges of life with a CHD and share those experiences, triumphs and fears away from us parents who tend to be overly cautious and annoying. For one week, they’re all just regular kids who happen to have the same surgery scars. Over the past eight years she has met people who I know will be lifelong friends, and together they have enjoyed good times, and have held each other up during the most difficult ones, including the sudden loss of their good friend and fellow camp warrior Candace in 2015. While somewhat sad to see this time come, I know future years will probably see my daughter return as a volunteer camp mentor, and we plan to continue our support of Camp Oki and Lonny’s Smile (whose fundraising efforts have allowed this free program to expand and open even more spots for children). Have an amazing week, everyone!!” – Shauna, Deirdre’s mother.