Matters of the Heart: Thriving with Down Syndrome

My 4 month old cardiology appointment

Heart issues are common in children like me who have Down syndrome. Approximately 50% of babies with Down syndrome are born with a congenital heart defect (CHD), which means their heart didn’t form quite the way it should during pregnancy. These defects can range from mild to severe and often require specialized care, including surgeries or medical interventions. Thankfully, I am one of the lucky few who hasn’t needed surgery.

At birth, I was diagnosed with two common heart issues: a patent ductus arteriosus (PDA) and a patent foramen ovale (PFO). A PDA is a condition where a small blood vessel that should close after birth remains open, allowing blood to flow incorrectly between two major arteries. A PFO, on the other hand, is an opening between the heart's upper chambers (the atria) that usually closes shortly after birth. Both conditions are considered mild compared to other heart defects, but they can still cause complications if they don’t close on their own.

When I was a baby, mommy was told that if my PDA and PFO didn’t close naturally, I might need surgery to correct them. To monitor my heart, I saw a cardiologist every three to six months. During these visits, they used special tools like echocardiograms and EKGs to check how my heart was working. Each time, mommy held her breath, hoping for good news. By the time I was 18 months old, both my PDA and PFO had closed on their own! Mommy was so relieved, and I didn’t need any surgery after all. Although my heart is healthy now, it’s something my doctors continue to watch as I grow.

Heart health is especially important for children with Down syndrome because even minor issues can sometimes cause fatigue or affect growth and activity levels. I’m lucky that my heart has stayed strong, which means I can fully participate in activities I love, like playing sports at school and competing in the Special Olympics.

For many kids with Down syndrome, early detection and treatment of heart issues are life-changing. Advances in medicine have made it possible to diagnose most heart defects before or shortly after birth, allowing doctors to create a treatment plan right away. Surgeries to correct CHDs are very successful, with many children going on to live healthy, active lives. Regular check-ups with a cardiologist help ensure that any potential issues are caught early, even in kids like me who didn’t need surgery.

Parents of children with Down syndrome should know that heart problems, while common, are manageable with the right care. Early intervention, regular monitoring, and a healthy lifestyle can make a big difference. I’m so grateful that my heart is strong and healthy. It allows me to enjoy life to the fullest, from running on the field to making memories with friends and family. I’m living proof that kids with Down syndrome can thrive, even when faced with challenges.