Giving Back the “Firsts”

My first word.

My first day of school.

My first time stepping onto a baseball diamond.

My first day of college.

My first day of my first job.

These moments for me are iconic, documented, and remembered.

For children with congenital heart defects, especially in Iraq, these experiences can be rare and miraculous.

If I had been born in Iraq, instead of a cozy hospital room in Illinois, I might not have had these iconic firsts. But I did have these moments—though in my story there were a few more:

My first diagnosis.

My first pacemaker.

My first open heart surgery.

My first stroke.

My journey began in July 1992 with the diagnosis of a congenital heart defect for an oxygen-deprived “blue baby” who would need not just one but six surgeries (and counting) over the years.

You can track down my parents for the story of the trying days after the diagnosis and the first few surgeries. I am not going to write here about their fears and doubts. I am only going to share with you my own.

Everything before January 2003 is a blur to me—the arrival of little siblings, playing catch in the backyard, visiting my grandparents’ farm, and collecting as much Michael Jordan memorabilia as possible.

January 2003 is when my condition came into focus, when my 10-year-old mind and body felt the full weight of life with a sick heart. After one of my older sister’s basketball games, we were eating at McDonald’s when I suddenly fell out of the booth and onto the floor. My youthful ego would not allow me to admit something was wrong, so we got in the car and made our way home. That was when my speech became incoherent and my right arm started twitching.

My mom, a pediatric intensive care nurse, told my dad to drive to the nearest rural hospital, about six minutes away. We made it to the ER, and that was when I heard the word “stroke” for the first time.

At the moment I fell out of McDonald’s booth, a clot had traveled through the hole in my heart and to my brain. I won’t go into all the details and fears of the next few days, but I came out on the other side without any deficits—except I was now on intense blood thinners, which meant the previous summer would be my last one playing baseball.

I was devastated.

Not being able to play took such a toll on me. “I just wanted to be normal,” I sobbed to my parents on the front porch that summer.

I had a decision to make: have surgery to close the hole in my heart or be on blood thinners for the rest of my life. The doctors and my parents left it up to me. I chose the surgery.

The next few years included a few more surgeries and a replacement pacemaker. When I left for college in the fall of 2010, I was ready to for a fresh start, free of any mention of kids with sick hearts. That’s when the Preemptive Love Coalition came into my life.

I was hooked. I got the chance to tell my story and how it related to thousands of children just like me—children that Preemptive Love was saving. They had broken hearts that needed fixing, but they did not have the same opportunity to get them fixed that I had.

So now that’s what I do every day. I wake up, get dressed as I look at my scar-riddled chest in the mirror, and sit in front of my computer to save children who have a higher chance of dying, simply because of where they live.

The only difference between me and the many children dying across Iraq every year because of heart defects is that I was born in the United States and they were born in Iraq. If the facts were switched, it is likely I would not be at my computer writing this sentence.

That was a fact I couldn’t run away from any longer. Preemptive Love called for me to lean in. Lean into my anger, my frustration, my illness, and my pain—and to love anyway.

I tried for years to run from my disease, but now I embrace it. I cannot say that I am thankful for it—yet it motivates me.

I do not know what tomorrow will bring, but today I am healthy. So today, I work to ensure that every child gets the lifesaving heart surgery they deserve.

Thank you for joining me in this work—and for loving little blue babies just like me.

Be a HeartMender with me this Valentine’s Day.

 

About Dane Barnett

Fundraiser for Preemptive Love Coalition. Advocate for "the other", the arts, and a good bonfire. Sometimes I get to look up from my spreadsheets of data and write for the blog.


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Giving Back the “Firsts”
Giving Back the “Firsts”
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