My son, Angus, was born with a congenital heart defect (CHD) that was repaired shortly after his birth. Approximately 40,000 babies, 1 in 110, are born with CHD each year.
We learned about his heart defect at my 20-week pregnancy check-up and were immediately referred out to a pediatric cardiologist. It was devastating. I never pictured that I would have pulled that card in life; that I would have a medically fragile or disabled child. That is not something you imagine when you’re having a baby.
We live in Montana, which doesn’t have a pediatric hospital. I delivered our son at Women’s Hospital in Boston and Angus had heart surgery at Boston Children’s Hospital at just two-days-old. At 14-days-old, he got a pacemaker to keep his heart beating. At 28-days-old, we were released from the hospital.
When the bills started rolling in all I could do was laugh to keep from crying. Boston Children’s Hospital is the best in the country, but it was also out-of-network. At the time, we were covered by insurance through my employer. While they worked hard to work out a deal with both hospitals, in the end, they only paid around half of the $500,000 in medical bills.
Having never really been sick, I hadn’t dealt with insurance much in my life. Through hours of phone calls and many hoops, we found out that our son would qualify for Medicaid for the time he spent in the hospital. The bill was paid retroactively.
As middle-class Americans just beginning our adult lives, I was terrified of the potential financial burden on our family. Medicaid was a life-saver. The granting of Medicaid for that month that our son was in the hospital changed the trajectory of our lives. With a financial burden of $250,000, we would have likely had to file for medical bankruptcy, ruin our credit, ruin our chance to own a home and potentially force career changes or a move.
This winter we celebrated paying off our son’s delivery from 2012. After insurance and after we negotiated with the hospital, our bill was just shy of $10,000. This was on top of several thousands of dollars in prenatal care. Our children are now both covered by my husband’s insurance plan through the state.
There are provisions in the ACA that help me sleep at night. These include removing the pre-existing condition exclusion, eliminating lifetime maximums and allowing adult dependents to stay on their parent’s insurance until age 26.
CHD is a lifelong disease. My son will continue to need care for his condition. His pacemaker will need replacement around the time he is seven-years-old. Our doctors are also watching his subaortic membrane since there is a 50/50 chance that he will need to have it fixed. Right now, he sees a cardiologist every six months.
When my son becomes an adult, his health and access to health care could seriously impact his role in society. Will he be so financially burdened that he won’t be a happy and productive member of society? He is at a disadvantage for no fault of his own. These are my fears.
Lindsey Bona-Eggeman lives in Seeley Lake, Montana with her husband and two sons. This blog was written in collaboration with Speak Now for Kids for their Medicaid Matters Series. Find out more about Speak Now for Kids at www.speaknowforkids.org. You can find them on Twitter, Facebook and Instagram at @speaknowforkids.
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