November CHD Story: Marc

Each month we will have a featured family / story to share with you.

Thank you, Ivone (Illinois) for sharing your story about Marc. Best wishes to you and your family.

CHD: Anomalous Origin of the Right Coronary Artery (Intramural)

Child's Age at the time of Diagnosis: 10

How your child's CHD was diagnosed: Echocardiogram

Marc's Story:

Marc was born at 33 weeks and weighed four pounds. He seemed to be a healthy child other than slightly underdeveloped lungs. His life was uneventful until he was diagnosed with a kidney condition, Nephrotic Syndrome, at age 9. As his medications caused hypertension (high blood pressure), his doctors at Children’s Memorial Hospital decided to perform an echocardiogram to assess whether the walls of his arteries were thickening prematurely.

The echocardiogram revealed that his right coronary artery did not originate where it was supposed to, and since it wrapped around his heart, rigorous activity such as playing on his soccer team, was pinching off blood flow to his heart. He was at high risk for a heart attack, much like the stories you hear of high school athletes collapsing in the middle of a game. Luckily, they had caught it by chance since he showed no outwards symptoms. Years of pediatric visits and he had no abnormal heart rate, no chest pains, nothing at all. It amazed us that for nine years our son had been at risk for a possibly deadly heart attack from something as simple as riding his bike or playing tag. And it took a thorough Nephrologist to catch it.

He was scheduled for open heart surgery a few weeks later. He was placed on bypass and stopped his heart while they unroofed the tissue around his artery, allowing it ample room to expand. After a harrowing 10 days in the PICU with seesawing blood pressures and near renal failure, he has recovered. We were lucky, or some, as we do, say we were blessed. He is expected to live a full life. I can’t imagine what would have happened had it not been discovered.

Message to other families:
Our doctors encouraged us to have our other three boys tested because studies have not proven or disproven a correlation with heredity. Families need to be aware of the symptoms of CHD but be cautious even without those. All it took for my son’s diagnosis was an echocardiogram, basically a glorified ultrasound. I had no idea that I should have been looking for the signs. As parents, we assume that things like prenatal ultrasounds are meant to catch things like this. Sometimes they do. But we are never told as parents that we’re not home free in terms of CHD. I can’t ever remember my pediatrician even mentioning it, not with Marc or my other three kids. We need to be more proactive in requesting CHD screenings. It’s a small price to pay.