New information about Congenital Heart Disease (CHD) has been released, showing that more and more individuals are surviving and thriving despite this disease.
CHD occurs at birth and affects approximately one in 100 children. It causes defects in the heart or greater vessels and can present anything from mild symptoms to life-threatening ones.
According to the latest available published data, 257,000 people in Canada are living with CHD with many more undiagnosed due to the nature of the disease.
One of those people is Prince George resident Heather Livingstone's daughter Britta.
“It's certainly through a wrench in the works of our day-to-day life,” said Livingstone. “It was pretty normal before we had our youngest and we were thrown suddenly into surgeries and going back and forth to the Children's Hospital. That whole first year of her life was just completely upside down.”
Due to CHD Livingstone’s daughter is without a tricuspid valve, causing her left ventricle to not fully develop. This can be a fatal condition without complex surgeries.
“I was still pregnant when we were diagnosed,” said Livingstone “We found out there was something wrong but she didn't get her actual diagnosis until after delivery because everything happened really kind of quickly, we were lucky to know that there was something wrong …
She's had three open heart surgeries, but the future is, we don't know, right? Kids are just small. People are just sort of starting to live later into adulthood, and so we're still learning what happens when you get in your 30s and 40s with a single ventricle heart.”
However, recent information released from the Heart and Stroke Foundation has shown that nine in 10 infants diagnosed with CHD are now living to adulthood.
This is due to better and earlier detection, more complex procedures with less invasive practices and easier access to specialized care.
One physician who has been on the front line of CHD treatment and specialized care is Dr. Kevin Harris who specializes in pediatric cardiology.
“I think every patient has an impact differently,” said Harris.”Providing care for patients across the age spectrum and in different communities is something that I enjoy. And so at BC Children's Hospital, we're fortunate that we do travelling clinics. I go to places like Prince George to try and provide care in local communities. That isn't necessarily something that's broadly available across Canada and all the different types of communities. That's one of the things that the heart and stroke are trying to emphasize is to make sure that patients have access to specialized care no matter where they live.”
Specialized care is very important to patients suffering from CHD as often treatment or specialists can be located in different cities or have long wait times.
Gaps that need to be addressed to increase the quality of care for people suffering from CHD include a lack of access to nurses, social workers, and psychologists, a lack of access for rural patients with specific needs and a lag in treatment as younger patients grow into adults with CHD.
Due to these gaps, the Heart and Stroke Foundation has been leading the development of a national strategy and trying to develop action plans to improve the systems of care and the equity and access to care.
Heart and Stroke is focused on six priority areas to address gaps: Specialized care, evidence-based care, optimal transitions, integrated health systems, community integration and whole-person care.
