Like any mother, all Yarrow Gillis wanted during her pregnancy was for her child to be born healthy, but an ultrasound two weeks out from her due date changed everything.
“We really didn’t know what was going on, we just knew that everything that we thought was going to happen was not,” Gillis said.
Gillis and her husband found out their daughter had congenital heart disease (CHD), requiring open heart surgery just a few days after her birth.
“She’s got multiple holes in her heart, throughout the chambers of the heart and the left ventricle is way underdeveloped,” Gillis said.
Since Gillis’s daughter, Maia, was born she has had three open-heart surgeries, but through medication and monitoring at the IWK Health Centre, the 10-year-old has been able to live a happy and active life.
1 in 100
Approximately 1 in 100 children are born with the disease, according to Dr. Kenny Wong, a pediatric cardiologist at the IWK. But not all diagnoses are life-threatening.
“You could be born with something as simple as a small hole in the heart, or a minor valve problem that would never cause you any troubles. Or, you could be born with something quite significant where you need surgery or a fancy procedure in the first few days of life in order to survive,” Wong said.
The pediatric cardiology team treats children throughout the Atlantic provinces.
“Through regional clinics that the IWK offers we travel to Bathurst, Moncton, Fredericton, Charlottetown, Yarmouth, Cape Breton, to do clinics so that we can see these kids in their home environment to save them some trouble,” Dr. Wong said.
Braveheart Support Society
In an effort to provide her daughter with more experiences, Gillis created a not-for-profit organization to reach out to other families living with congenital heart disease.
Called the Braveheart Support Society, it’s meant to connect parents and children, like Maia, together. And with February being Heart Awareness Month and Congenital Heart Disease Week running Feb. 7-14, Maia said the group has an open-door policy.
“Well our parents can meet up and we can have like play dates together and we can talk about ourselves and not feel like shy, and different,” Maia said.
WATCH: February is heart month, and this week is International Congenital Heart Disease Week. Andrea learns more from the Braveheart Support Society.
Gillis said the society is always looking for funding sources and donations, to better support children and their families with congenital heart disease in Atlantic Canada.
To provide more awareness about CHD, the Braveheart Support Society also launched a website providing facts about the disease, and “surgery care packages” for children undergoing open-heart surgery at the IWK.