Over 40 years ago, a heart birth defect was a different experience than it is today. When I was diagnosed, I experienced far less care than when my son received a similar diagnosis. After years of not getting the care I’ve needed, that’s about to change.
When I was born, the doctor noted what they explained as a murmur. My mother either didn’t understand or was never told a more specific diagnosis. I wasn’t sent for further testing or to see a specialist. The rural community hospital where I was born didn’t have the facilities of a major, university hospital. Culturally, there was an acceptance that congenital defects either were lived with or weren’t survivable. The notion of aggressively treating a newborn heart defect wasn’t advisable. There was nothing but resignation; it is what it is.
Treading Water, Not Treating Flutters
After that, I would merely check a box on new physicians’ forms. Dentists were baffled and confused that I didn’t have more information for them. Do I need antibiotics before treatment? I don’t know. Sometimes a doctor would ask about my heart. Usually the presumption was whatever problem I had faced had healed on its own. If it were more of a problem, then someone else would have caught it. I have faced occasional flutters with my heart rhythm, but never in a doctor’s office or when I could get a witness.
A Different Experience For the Next Generation
In 2010, I had a baby with severe AVSD, or atrioventricular septal defect. We discovered that his defect was caused by a genetic defect from one of his parents. My congenital defect suddenly had more importance. He has the benefit of a pediatric cardiologist and team of specialists. He’s experienced multiple echocardiograms, EKGs, chest x-rays and medication. Granted, his defect is far more severe than mine. However, not knowing more information from my defect didn’t help. Since then, we have more information for both of us, from genetic testing.
After learning my risk factors from our genetic results, I’ll finally be seeing a cardiologist soon. I’ll have my first EKG, possibly followed by an echocardiogram. I’ll find out if I still have a murmur, or ASD, and we’ll test for cardiac myopathy. I’ll also have access to a pulmonlogist, if my lung function is a concern. At last, I’ll get the health care I’ve needed.
My lesson is to never give up. Technology has finally caught up to my needs. Heart defects that couldn’t be treated when I was born now have hope.