Congenital Heart Defect (CHD) Awareness Week is held every year from February 7 to 14. According to the Centre for Disease Control and Prevention, CHDs are the leading birth defects that cause death in infants and adults. Approximately 1% of births per year are affected by CHDs, which exist from birth and often affect the structure and shape of a baby’s heart. Since the condition is so prominent and is a leading cause of death in children, it is very important to make medical professionals, researchers, families, and the general public more aware of the condition.
Matthew Has Heart
Matthew is a social 15-year-old teenager who likes to observe the world around him and to watch and play basketball. When his mom, Melodie, was only 17 weeks pregnant, she received the news that Matthew would be born with Down Syndrome. A few weeks later, a specialized ultrasound also confirmed a CHD called Atrioventricular Septal Defect (AVSD). This meant he had a large hole in the centre of his heart, and the valves meant to control the blood flow between the heart chambers might not be formed correctly. This early diagnosis gave his family the opportunity to educate themselves and meet with many specialized doctors before being thrown into the situation.
Matthew was born two weeks earlier than expected, thwarting medical plans, but was fortunate enough not to need immediate surgery. He spent a few weeks in the NICU and, at fix months of age, had his open-heart surgery. “That day was one of the hardest days of my life,” recalls Melodie. “I handed over my five-month-old baby boy to a nurse at Sick Kids Hospital, not knowing if I would get to see his beautiful little face again! Five and a half hours later, we received the news that the surgery was a success! The eight days that followed had some terrifying moments, but in the end, we brought home a healthy baby boy that is now 15-years-old and the centre of our universe!”
When asked what advice Melodie would give to families with a new diagnosis, she said, “Make sure to ask questions and don’t be afraid to tell their doctors if you aren’t clear on what they are saying. Our cardiologist drew us pictures, and I remember we took those photos and had dinner with family afterwards at a restaurant, where we used those photos to explain it to the grandparents. We made sure to educate ourselves as much as we could. We reached out to other families who had been where we were, and it helped so much. Just knowing you aren’t alone means so much. This is where Grandview Kids excels, and although we weren’t a part of Grandview Kids at this exact time, it paved the way for us to be so greatly involved with Grandview Kids as we knew the importance of helping other families just as we were helped.”
Melodie and her family continue to be strong advocates for Matthew. They are helping others walk the same journey through family engagement and the power of storytelling. “Matthew has one of the biggest hearts I know,” says Melodie. “It may not be a perfect heart, but it’s a strong and loving heart. He is sweet, caring and sensitive. He loves people, and people love him. They see his perseverance, his courage, and his strength. We have Grandview Kids to thank for helping us tell our story many times and inspiring people.”
Check out more Grandview Kids articles
- International Epilepsy Day – February 12
- Introducing AlayaCare, our new Electronic Health Record
- Rare Disease Day – February 28
- Congenital Heart Defect Awareness Week – February 7 to 14
- Feeding Tube Awareness Week – February 5 to 9