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The Promise I Made to Advocate for People With Congenital Heart Defects

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After being born with a severe congenital heart defect (CHD), I’ve come to learn there are no guarantees in life. But far before I ever understood it, my parents lived it in a way that few can imagine. I have no doubt that congenital heart disease is harder on the parents than the children — the children were born warriors and only know how to fight.

Before my third open-heart surgery when I was in kindergarten, my prognosis was pretty dim. So much so that my dad prepared my friends’ parents of my potential passing. That’s something no parent should ever have to do.

In a moment of true faith and honesty, my mother made a promise to God. She promised him if he took care of her baby boy that she would take care of his children.

After I came out of surgery, I had the healthiest heart I had in my whole life. My family believed God had held up is end of the deal, and now it was time for my mom and my dad to hold up their end.

Six months after my return from the hospital, my house was now a foster home for six children. The care offered in my parents’ home was to many of the sickest children in the region. Growing up in those walls was the second greatest blessing of my life — only second to my continued blessing of life.

After 15 years and 125 foster children, my mom decided it was time to hang it up. Then a phone call came in that changed all our lives forever.

A baby girl with Tetralogy of Fallot was in need of a home that could care for her. It was the one phone call my mom had been waiting for all those years —the baby had the same heart defect I had. There was no hesitation in her acceptance.

However, the baby was much sicker than I ever was and had other issues that complicated her care. The doctors warned my mom it was most certainly respite care, but she didn’t waiver.

Baby Michelle came and was beautiful and happy but extremely fragile. We all had experience raising very sick children, but trying to keep a baby from not crying or straining to keep her going each day was a whole different experience.

One night she stopped breathing as her heart stopped, and my father revived her on our dining room table before the paramedics could arrive. Months later, she was getting prepared for open-heart surgery, but she went into arrest before she ever made it into surgery. This time, nothing could be done. She became one of the many CHD angels who are so dearly missed.

I remember getting the call from the hospital as my mom and sister were giving her a final bath and dressing her one last time. I shut down. CHD isn’t fair. It doesn’t discriminate. “Congenital heart defects are the most common birth defects,” according to the  Children’s Heart Foundation.

But I never knew it would take the life of my sister. At 20 years old, I had no idea how to comprehend a death that was so close to me in so many ways. It was a harsh reminder of my own mortality.

I was in college, which was a six-hour drive away from home, and I convinced myself (and somehow my family) that I couldn’t make it home for the funeral. Seems pretty cowardly as I look back on it. But I don’t know that I could have held it together for any part of it — even the drive home. Every ounce of me knows I should have been there now, but I can’t change what should have been.

As I was driving the other day, I looked over to the empty passenger seat and saw baby Michelle. She was a bubbly teenager, looking out the window. It was the first time I had ever seen her as anything more than that fragile baby girl. My heart broke as I thought of what could have been and all the years and memories that were never a possibility for her and my family.

A promise is a promise, and it was kept even when it was known it would hurt the most. It’s a promise that’s still being kept 28 years later.

As I saw that teenage girl riding in my car with me, I made a promise to her and to God to be the best CHD advocate and medical professional I can with them at my back. I hope I can improve the quality of lives of adults with congenital heart defects who have beaten the odds and survived past their 18th birthday and to honor all those who have lost the fight, including baby Michelle.

I learned what it means to keep your promises, even when it seems easier to run the other way. I will never run the other way. I can promise you that.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 13, 2016
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