Somehow, I just turned 50. Growing up with a complex congenital heart defect (CHD), I always entertained an unspoken possibility that I might not make it to the next decade milestone. Now suddenly, I’m getting mail from AARP. I’m far closer to retirement than I am to the open heart surgery that changed my life when I was a teenager.
It seems like a good time to thank the people who helped me make it this far.
My mother. It can’t be easy to hear that your newborn’s heart is put together wrong, and there is no cure. Upon my diagnosis, my mother became the Sherlock Holmes of pediatric cardiology. She wrote letters to pioneering heart surgeons like Dr. Michael De Bakey and Dr. William Mustard looking for guidance (they wrote back). She found articles about children with heart defects and their doctors—no small feat 20 years before the Internet. She volunteered as a “lunch lady” at my elementary school so she could keep an eye on me. At the time I thought she was being an overprotective worrywart, but now I realize she was doing what mothers do instinctively—protect their children and make sure they outlive them. When I had my fourth surgery, a Fontan that enabled me to live a more active life, a few weeks after I graduated from high school, she slept in the chair in my hospital room every night. Two months later, she held her breath, said a million prayers, sent me off to college, and likely didn’t sleep for four years.
My friends and significant others. You barely had your license, but you drove an hour to an unfamiliar city to visit me in the hospital and talk about music and movies—as if I didn’t have scary tubes all over the place. You hung out with me in my living room for hours when you could have been at the beach or spending time with your other friends before leaving for college. You pedaled slowly, paddled the tandem kayak twice as hard, and stopped to rest every five minutes on an uphill hike. You carried my suitcase up the stairs at the airport and got the car so I didn’t have to drag it an inch farther. You were patient and you made sure I could take full advantage of this life I’ve been gifted.
My doctors. I’ve moved around the country a bit, but I’ve been fortunate enough to have lived within an hour or two of the best adult congenital heart disease specialists. From the Adult Congenital Heart Program at Boston Children’s Hospital (where I had my Fontan surgery) to the Johns Hopkins Adult Congenital Heart Disease Center to UC San Francisco Adult Congenital Heart Disease Clinic, the best minds and most compassionate hearts in adult congenital heart disease have cared for me. It is because of their thoughtful decisions and knowledge that I have enjoyed a relatively healthy adulthood and lived to receive that AARP card.
I recognize that I write this from a place of immense privilege. I grew up in the Northeastern United States, with middle class parents who had good health insurance and the ability to advocate for my care. As an adult, I’ve held jobs that provide good health insurance and allow me to take days off for clinic visits without worrying about getting fired or losing pay. Not everyone has this good fortune.
In fact, 90% of adult CHD patients who should be in specialty care are not. People of color in particular are not getting the care they need. According to one study on racial disparities in clinic follow‐up among children under age five (Jackson, 2018), nonwhite patients had a 53% increased risk of lapse in care compared to white patients. This gap will create serious complications for these patients as they age.
If you know of an adult with a congenital heart defect who is not receiving specialty care, please direct them to ACHA. The organization has resources to help people find appropriate care, navigate insurance issues, and better understand their medical needs.
Jackson, JL, Morack, J, Harris, M, DeSalvo, J, Daniels, CJ, Chisolm, DJ. Racial disparities in clinic follow‐up early in life among survivors of congenital heart disease. Congenital Heart Disease. 2019; 14: 305– 310. https://doi.org/10.1111/chd.12732
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