My 1-year-old Will Have $3 Million in Medical Costs

Bethany
Garner, NC
United States

I was so excited to meet our second daughter on March 22, 2016. Alarmingly, she was born blue, and within 12 hours she was airlifted to a major medical center. We didn't have any knowledge of it during the pregnancy, but only half of her heart had developed. She was diagnosed with hypoplastic left heart syndrome. Most of the time, there's a series of three surgeries that can be done to rework (not cure) the heart. Not my daughter — her heart was too malformed. Her only option was a heart transplant.

By two weeks old, she was officially on the organ transplant list. My daughter lived in pediatric cardiac ICU for five months, and received constant IV medications to keep her alive. She received blood transfusions, X-rays, ultrasounds, lab work, and went through two lesser surgeries to buy her more time. After 145 days on the list, she received a new heart, and spent another month recovering before going home.

My daughter is doing well, but for the rest of her life she will require expensive immuno-suppressant and anti-rejection medications. And she'll need regular cardiology visits and biopsies. Her immune system is weak, so any time she gets sick, she could end up being admitted to the hospital for a few days. And we don't like to think about it, but many heart transplant recipients find themselves in need of a second heart transplant, down the road.

She's not 10 months old yet, and the best we can figure, she's racked up $2.9 million of medical costs. We have a volunteer team that has worked very hard to host fundraisers and raise money to defray the out-of-pocket costs for her this year. But we know that's not a long-term solution, especially if the Affordable Care Act is repealed.

This is a pre-existing condition if there ever was one. And lifetime caps on coverage? Forget about it. About the same time we're singing "Happy 1st Birthday" to my daughter, we'll be clicking over into $3 million territory. If every following year is just a third of that, by the time she graduates high school she'll be at $20 million. With the threat of repeal to the Affordable Care Act, we must ready ourselves to make tough sacrifices and choices, just to keep my daughter alive.

Subscribe