The pulse of tomorrow
Imagine an active, playful, and happy child on vacation. She is swimming in the pool with her family close by when the unimaginable happens: out of the blue, the seemingly healthy young girl goes into cardiac arrest.
For Airie and her family, this story was a terrifying reality. Days after this event, Airie’s father Amos and mother Keiko brought her to BC Children’s Hospital where she was diagnosed with Long QT Syndrome, a heart rhythm condition that can cause erratic heartbeats, resulting in fainting, seizures or even sudden death.
Today, one in every 100 children is born with heart disease. While most children never experience a cardiac arrest, Airie herself requires ongoing monitoring to check her heart health as she grows. Prescribed medications and check-up appointments allow her and her family to live their lives without limiting her potential.
Donor support has provided the best cardiac care possible for kids like Airie through critical equipment, ground-breaking research initiatives, educational resources and family-centred care. Below are just a few ways donors have made a difference in heart care this past year.
“It was a relief to finally know the cause, to know what the effects of the medication are, to know we can live a normal life.”
– AMOS, AIRIE’S FATHER
Heart resources at families’ fingertips
Many patient families feel lost and overwhelmed when their child is diagnosed with a cardiac condition. Thanks to the support of donors like the Windsor Plywood Foundation, the cardiac care team at BC Children’s is beginning to develop a new, digital hub that will provide 24/7/365 access to up-to-date resources, geared specifically towards patients and their families.
Once created, this virtual educational hub will house key patient support materials, offer a direct digital connection back to the Heart Centre, and simplify the potentially overwhelming patient journey. In just a few clicks, families will be able to get the information they need about their child’s diagnosis and the ongoing care they require in a user-friendly way.
Still in its early stages, the “heart hub” will eventually include custom-created, digitally interactive 3D models of common heart conditions that can be viewed on computers and mobile devices and also explored through virtual reality — offering new ways for patients and families to understand their clinical conditions.
Surrounding children with specialized care
Finding out your child has a heart condition can be stressful. Being diagnosed with a heart condition can be hard on a child. Some of the impacts on the child’s health are not physical, but mental. For all of these reasons, the BC Children’s Heart Centre staff understand that it’s just as important to care for kids’ emotional needs as it is for their medical ones.
The department’s psychologist, Dr. Winnie Chung, supports the mental health of cardiac patients, their families and the medical teams who treat them. Dr. Chung has cared for over 100 patients and their families, working with them in consultation with their medical teams to provide individualized support.
Access to psychology supports has never been more difficult or more important.
Throughout diagnoses and treatments, there can be lasting impacts on the child, including nightmares, sleep issues and other symptoms that may heighten if they are not addressed. Kids who need ongoing care can be fearful about getting an echocardiogram or blood samples.
Dr. Chung works with patients and families to manage the stresses of dealing with a heart condition, including managing a new diagnosis and supporting patients and families in preparing for an upcoming procedure. She counsels patients and families as they adapt to caring for and living with a heart condition, and ensures the needs of youth with pre-existing mental health conditions are met so that they can have healthier futures.
At the heart of it all
The field of pediatric heart disease continues to evolve in diagnosis, treatment and follow-up care. With the generosity of key donors like Canadian Pacific, Barb Harris, the Rooks family and the Ticknor family, the Children’s Heart Centre at BC Children’s Hospital has received support to advance cardiac care, both today and tomorrow.
We thank these donors for helping bring along advances in the field that are leading to longer, fuller lives for children receiving cardiac care.