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A Mom's Plea During Congenital Heart Defect Awareness Week

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Today is February 10.

Smack dab in the middle of Congenital Heart Defect Awareness Week, which runs from February 7 to the 14.

My 6-year-old son, Bodie, was born with a complex congenital heart disease (CHD) called hypoplastic left heart syndrome, or HLHS. The structures on the left side of his heart didn’t form correctly. In his case, he has no left ventricle at all. His condition is incompatible with life. But thanks to modern medicine, he has been able to have life-saving open-heart surgeries to reroute his blood flow, to make his one ventricle do the job of a two ventricle heart. For most kids with HLHS, the surgical route includes three open-heart surgeries. In my son’s case, his journey  has included five open-heart surgeries, a pacemaker and an additional heart surgery through his back.

Yes, my 6-year-old has had six heart surgeries. One for each year of his young life. And six heart catheterizations and more hospital time and other medical procedures than most adults. And yet, he lives. He loves. He laughs. He is a bright and silly first grader who is discovering the joy of reading and loves math. He goes to karate twice a week. He loves Legos and “Star Wars.” He is an ordinary kid living life amongst extraordinary circumstances. He does the important task every day of making lemonade when life has most assuredly given you nothing but lemons.

So, during CHD Awareness Week, I am usually asking people to wear red, spouting CHD facts and sharing my son’s story, of how much he has overcome. But this year is different.

In November, Bodie was diagnosed with sudden severe heart failure. He is now struggling to keep up. His heart is tired. He doesn’t have the endurance of his peers. He cannot keep up on the field, or on the playground. And there are days it really bothers him, days where he tells me with tears in his eyes “I just want to run without getting out of breath.” Since then, we have done a heart catheterization,
changed up medications and held our breath. We are waiting, hoping, willing his heart to get better. It has not yet. If it does not, we will have to begin the arduous and painful task of having him evaluated for a heart transplant. And hope and pray that he is a candidate. And hope and pray that a heart becomes available in a world where there are already not enough organs for the people who desperately need them. And hope and pray that he is one of the success stories, where a new heart gives him a whole new lease on life.

And then we have to explain to our 6-year-old that yes, someone else, another child, will have to die for him to live. Of course, they will not die so that he can live. Another child will pass, and that family will make the selfless decision to donate their beloved child’s organs. And that decision will have to be made for my son to live. Two very different things. But so hard for a child’s mind to grasp.

This journey is hard. So, so, so very hard.

So this year, I don’t want to talk about CHD awareness. I don’t want to ask people to wear red. I don’t want to spout CHD facts and to make sure people are aware of the symptoms. CHD already consumes my every waking thought (and a lot of my sleeping thoughts, if I’m being honest). We are in a constant state of worry and stress because of CHD. I don’t want to focus on it any more than I have to.

But then I remember.

My son’s existence depends on CHD awareness. He is depending on advances in science and medicine.

Advances that mean injecting his own stem cells into his failing single ventricle heart to regain heart function.

Advances that mean developing and testing effective devices to bridge failing single ventricle hearts to transplant. These devices will keep their bodies healthy while waiting on that perfect heart.

Advances that mean bringing ghost hearts and artificial hearts to the market so that no one has to pass away waiting for an organ. And no child has to be told that another child has to die for them to live.

Advances that mean extending the life of transplanted organs, so that the decision to get a heart transplant does not mean having the same conversation and having to retransplant 10 years later.

So.many.advances. And advances only happen when people are aware, when they
donate funds to critical organizations that are pushing this research forward.
Organizations like the Children’s Heart Foundation, The Mayo Clinic, Children’s
Hospital of Philadelphia and Boston Children’s Hospital.

So, this year, this is my CHD awareness plea. So much of CHD awareness is about the signs and symptoms of CHD. And those are all important. But, frankly, I’m in the thick of living with CHD right now and I don’t have the energy for that right now. That’s a different blog post. Today, my family is fighting CHD tooth and nail. And it feels like we’re losing a little bit of ground each day. And that’s a hard space to be in. So today, I have the energy to stand strong, and to hug my son, and to keep making lemonade with him. And to spread awareness so more people know, and more people fund, life-saving research.

That is it. That is all I want for CHD Awareness Week this year. More research. More funding. More chance at life for my Bodie and for so many kids like him.

mom and son holding red stuffed heart

Bodie turns 7 next week. All we want is more birthdays with our sweet little boy. And all of the kids like him. Ordinary kids living amongst extraordinary circumstances.

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Originally published: February 10, 2017
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