The New Normal
A family reaches out – and learns to live with heart disease
by Gail Johnson
In the first couple of years of her youngest daughter’s life, Tracey Carpenter heard from doctors time and time again that her child was allergic to dairy. Her maternal instincts kept telling her otherwise, though; something just didn’t seem right. After pushing for further testing, Tracey learned that her child, Avery, had a rare heart condition. She remembers how stunned she and her husband were when they heard the news.
“We were just numb,” Tracey recalls of that day in 2009. “Her heart was the size of an adult man’s, and it was barely twitching. It shocked everyone in the room.”
Avery has a congenital heart defect called anomalous left coronary artery from the pulmonary artery (ALCAPA), which results in a lack of oxygen to the heart. The condition affects one in 300,000 babies, and it has a mortality rate of 90 per cent if not diagnosed within the first year of life. Avery was two-and-a-half.
On the afternoon of her diagnosis, Avery was admitted to the Pediatric Intensive Care Unit at BC Children’s Hospital in preparation for surgery the next day. She was in hospital for the following five weeks, and she’ll need to take medication for the rest of her life.
Caring for a child with a serious heart condition is a daunting task.
“It was very scary at first; we were in complete crisis mode,” Tracey says. “We had to relearn how to look after her. It was about finding a new normal.”
The Carpenters eventually turned to the Children’s Heart Network (CHN), a provincial non-profit organization that offers support and resources to families facing heart disease.
For Tracey, speaking to another mom whose daughter had also endured heart surgery was a lifeline.
“I found someone who understood what we were going through and what our new normal was like,” she says. “Having a heart kid is very hard to explain unless you’ve been there yourself. It’s hard for people to relate. You go from crisis to coping to thriving. But you never know when a crisis is going to hit again. You live with this ‘what if?’ It’s difficult for other families to understand that.”
With a board made up entirely of volunteers, the CHN has grown tremendously since it was launched in 1983 by two Victoria families. Today, it has more than 600 families in its database.
Even with its expansion, the organization has never lost sight of its aim to be there for people throughout their experiences with a heart condition.
“We believe that there’s no better support or resource than somebody who’s walked in your shoes,” says CHN provincial coordinator Samantha Aitken. “It provides an opportunity for families to connect and support each other through challenges we face. The CHN has gotten bigger, but it still has a real warmth.”
The network reaches out to heart families in several different ways. Aside from a newsletter and educational resources, it holds “Heart Parent” coffee groups, where parents meet up once a month at a local caf.. The CHN also holds all-ages events like a Christmas party and a summer barbecue. Teens bond at the CHN’s Hearts of Gold youth program, at summer camps for kids from all over the province, and at transition workshops that help prepare them for the move from pediatric hospital care to adult care.
The network also holds fundraising events, such as an annual wine gala, and helps organize a biannual heart conference for patients, families and health professionals.
Dr. Shubhayan Sanatani, the new division head of Pediatric Cardiology and medical director of the Children’s Heart Centre at BC Children’s Hospital, says the help the network offers to patients and their families is invaluable.
“The Children’s Heart Network is an amazing group of families, and to really understand its value and importance you need to step back and think of the incredible disruption and challenges that some of these families endure,” says Dr. Sanatani.
“Sometimes they come in not knowing their child has heart disease, and they leave with a lot of information, which is overwhelming. It’s so helpful to have a network of people who are going through it or who’ve been through it who can give them support and guidance and reassurance.
“They also give families a look to the future,” he adds. “The most severe forms of heart disease are usually diagnosed in the first few months of life, and parents may wonder about all sorts of things, like, ‘Is my child going to be able to do sports?’ To have people who’ve experienced what you’re going through is very powerful.”
Parents can also train to become someone to lean on for families just receiving a heart-related diagnosis. Tracey has gone on to become a resource parent herself.
“It’s so rewarding to be on the other side of it, to help people when they’re in that crisis mode,” she says. “It’s very reassuring to have someone to bounce ideas off of or to talk to when you’re worried.”
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