Reform: It Means No Lifetime Limits for Children Born with Pre-existing Conditions

My name is Robyn Martin.  I have excellent employer-based health insurance, unlike millions of other people in my situation. I am healthy. Although I am passionate about this issue, I’ve not considered myself to be personally affected by the Affordable Care Act until recently.

My little boy, Jax, and his twin were born in August, 2011. While Jax’s brother is medically perfect, Jax was diagnosed with a genetic disorder and serious heart condition early in my pregnancy. Prenatal care was frequent and extensive with MRIs, ultrasounds and echocardiograms.

When the boys were born, Jax was transferred to the NICU at Children’s National Medical Center. We found out more about his condition during his stay. His heart is on the wrong side of his chest. His intestines are reversed. He may have developmental delays. He may have cognitive delays. He was born with a congenital heart deficiency requiring early open heart surgery to repair five serious birth defects.

After three weeks in the NICU, Jax was sent home to grow and develop until he was big enough to have the surgery.  Every moment of that wait was terrifying and stressful as I watched this pale, largely unresponsive baby simply live, rather than thrive, being unable to let him cry hard as his heart might stop with the effort, taking him to countless doctors’ appointments – all while caring for his twin brother and their two year old sister.

On November 22nd, Jax had successful open heart surgery and spent 10 days in recovery. His heart is strong and we could see results immediately as his blood oxygen levels soared and his skin turned rosy. We will still have significant medical and developmental issues to address, but his prognosis is excellent.

The Affordable Care Act is relevant to us – crucial to us – for a couple of reasons. Because of this law, we did not have to worry about lifetime limits on Jax’s health insurance coverage. I don’t know what the entire bill for Jax’s medical care has been to date, but I know that his first day in the NICU cost over $150,000 and he was in the NICU for 21 days. I can only imagine how much the medical intervention for my son’s life would have cost us without health insurance or with a coverage limit. We would have moved mountains to pay for that medical care, but not having that worry is invaluable to us.

Additionally, the health reform law ended the practice of refusing or limiting insurance coverage based on pre-existing conditions. Jax has a myriad of these conditions and before the Affordable Care Act, I fear that I would be unable to leave my job before he aged out of my coverage. While I love my job and have no plans to leave, not feeling stuck is an important part of job satisfaction. And a lot can change before he ages out of my coverage.

Jax and I have a lot to be grateful for. And the peace of mind represented by this health reform is amazing.  The ACA isn’t about pages and pages of regulations and rules.  It isn’t about the controversies we hear spun on talk radio or argued about in debates.  It’s about this little boy who will be able to access quality, affordable health care through his life.  It’s about our family’s ability to keep our house and pay our bills and afford to care for all three of our children, not just health care for one kid.

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