Information sessions aim to support parents of children with congenital heart disease

Congenital heart disease (CHD) affects more than 11,000 children across Alberta, but new information sessions aim to provide comfort and a better understanding for parents on how to manage symptoms.

CHD occurs when a child is born without adequate blood flow to their organs, which may require serious, life-saving surgeries to repair the heart in critical cases.

The disease can vary from mild abnormalities such as a small hole in the heart, to severe situations in which the heart is poorly formed or missing important structures.

Calgary pediatric cardiologist Dr. Kim Myers says 75 per cent of these babies will survive to adulthood and those odds improve to 95 per cent for those with milder conditions.

But she says a better understanding is still needed of how the heart and brain function together as a child with CHD develops.

"We know that there is a huge impact on congenital heart disease on brain development and so that's really where the thrust of our research is right now -- we are trying to understand why this happens," Myers said.

"What we need to work on is how to make a difference. I don't think we have great strategies yet for how to improve long-term neurodevelopmental outcomes but we're starting and so that's what we're starting to work on teaching families."

Calgary pediatric cardiologist Dr. Kim Myers says a better understanding is still needed of how the heart and brain function together as a child with CHD develops.

A workshop from noon to 1:30 p.m. on Jan. 21 at the Calgary Central Library aims to offer support.

The event will be the first of seven monthly sessions for parents of children with CHD to learn the impacts of the disease on neurodevelopment, learning and social-emotional skills.

Future sessions will be held on the third Sunday of each month, in person and online over a Zoom livestream.

Upward of 4,000 children with CHD are treated at the Alberta Children's Hospital in Calgary, including 10-year-old Sam McGuire.

He has undergone five open-heart surgeries already after being diagnosed with a severe heart defect at birth.

Sam McGuire, 10, has undergone five open-heart surgeries already after being diagnosed with a severe heart defect at birth.

His mother, Kristina McGuire, says she's thankful for the support of medical staff and doctors who have supported her son and her family.

"Sam is so resilient and he is a very joyful, vivid boy now, but because of the way he came into the world, we were very mindful of how we can help him because it was a struggle," McGuire said.

"These seminars are going to be like magic to us. They're wonderful to have because we, as parents, want to make sure that we know most about our kids. We want to be experts on our children and we want to support them in any way that we can."

Kristina McGuire says she's thankful for the support of medical staff and doctors who have supported her son and her family.

Today, Sam is stronger than ever, with his mom describing him as a "social butterfly" who loves to play with his friends.

"He doesn't let it stop him and he has become such a wonderful kid. I'm so blessed. We always used to say that every day after Day 5, when he was born, every day after that was a gift," McGuire said.

"So to other parents, please reach out to your community."

Today, 10-year-old Sam McGuire is described by his mom as a 'social butterfly' who loves to play with his friends.

The workshops will be funded in part by Heart Beats Children's Society of Calgary, which is a registered charity helping parents with children who have CHD.

The first session will focus on neurodevelopment and specifically focus on the connection between the heart and brain.

Calgary pediatric neuropsychologist Dr. Marsha Vasserman says kids with CHD are living much longer than they used to, which has led to doctors noticing the impacts on brain functioning as they enter school.

She says these workshops will help parents become more aware of areas where their kids are struggling.

"Working with some of these families, parents saw that their kids were struggling with learning or social development, but when we were talking about how CHD affected their development, parents were very unaware," Vasserman said.

"So now, we're seeing more and more of these kids with a wide range of difficulties -- everything from motor development to language, speech and social communication, lots of learning disabilities."

Vasserman says as children with CHD get older, anxiety disorders can also develop, so her team's aim now is to target these issues as quickly as possible.

"The brain is dependent on proper levels of oxygen and when you have CHD, that is impaired, so we know the brain isn't getting those necessary nutrients and it affects how we develop," Vasserman said.

"This is so multi-factorial -- maybe you have a family history of some mild learning issues and all of this combines together to make this developmental piece much more prominent."

An average of about 720 kids are currently living with moderate to severe cases of CHD in Calgary

About 80 Calgary children are also born each year with moderate to severe heart defects.