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To My Fellow Americans, From a Mother of a Child With CHD

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My son, Steven, looks pretty typical. He loves Minecraft, Angry Birds and Roblox. He cannot wait for school to be over so he can focus on playing outside — swinging, running through the neighborhood with his friends and swimming. In so many ways, he is just like a typical 4th grader.

But Steven has a secret. He is not a typical kid. He was born with half a heart, a condition called Hypoplastic Left Heart Syndrome.

Almost 11 years ago he had a life-saving open-heart surgery at 2 days old. Two weeks later he had to have another open-heart surgery. And another when he was 5 months old, and yet another when he was 4 years old. And guess what? Chances are he will have another open-heart surgery in the next five years. During those first four years he had over 10 heart catheterizations, was on life support for five days, spent over 25 days in the Cardiac Intensive Care Unit and endless time on the main hospital floor. We have spent time dealing with medical post traumatic stress (PTSD), a case of strep throat that landed us in the hospital with septic arthritis, and endless blood draws and appointments to make sure his organs are tolerating all they have been through.


Those first few years were a blur.

Steven went over his “lifetime maximum” that our insurance allowed within months of his birth. So my husband and I were always searching for better jobs with better insurance, planning for the worst and hoping for the best. The stress was unbelievable, not only dealing with a medically fragile child, but wondering how we would financially be able to keep him alive. If we lost insurance due to exceeding our lifetime maximum, a had a job loss or any other reason, we would be put into the “high risk” pool. Sounds great, doesn’t it? It sounds as if this was a way to allow people with preexisting conditions to obtain health insurance.

It is not great.

High risk pools are about impossible to get into (they typically come with a wait list) and completely unreachable in cost for an average middle class American. When the Affordable Care Act (ACA) was passed, it was a relief to many families of kids with medical conditions. Steven was able to get treatments he needed without fighting the insurance companies. We no longer had to worry about what would happen when (yes, when, not if) Steven needed a heart transplant if our insurance would deny it as it would push us over the lifetime max. Life with a medically fragile child comes with so many other if’s, when’s and what’s. Basic medical insurance should not be one of them.

The House just took away basic protections for kids like my son, Steven. In one fell swoop they took away his chance of a full life. He was born with a preexisting condition. He will never be “cured” and he will never “outgrow” it. He will always require multiple cardiology visits a year as well as daily medications. He will without a doubt require future surgeries and hospital stays. But apparently to some, he is a burden to our society. He doesn’t deserve to live.

Baby in NICU

This is Steven 10 years ago. These are the people this vote is affecting. It’s affecting the ones who are most vulnerable and the ones who need us the most. It’s affecting the ones who are fighting a fight that no child should ever have to. We need basic protections to those literally fighting for their lives. We need to stand up for those without a voice.

We can do better America, I know we can.

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Originally published: July 12, 2017
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