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To Jimmy Kimmel, From a Mama Who Lost Her Daughter to CHD

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We are connected now, and I’m sorry for that.

The world of congenital heart disease (CHD) is not as small as some think, being that one in 100 children are born with CHD. Yet, regardless of its size, it can feel like such a polarizing and exclusive world.

You are now in a club of parents, of families, who are in a constant state of worry, fear and grief.

Parents who have watched their baby’s skin turn blue due to lack of oxygen.

Parents who have stayed up all night in the hospital with their newborns, not because they were hungry or needed a diaper change, but because they couldn’t take their eyes off of their monitor.

Parents who have passed the life of their child into the hands of a person they barely knew.

Parents who have seen their child after an open-heart surgery, barely recognizable as an infant beneath a body suit of gauze, tape, tubes and wires.

Parents who have looked into the eyes of their spouses and wondered how they were going to stay strong for them when they themselves were so very afraid.

Parents who have realized that the relief felt after a successful open-heart surgery can be fleeting, because CHD is incurable, lifelong and permanent.

Parents who are adjusting to a life of medications, obsession over caloric intake and growth charts, and a team of specialist doctors they never thought they’d need.

Your life has changed. You’ve entered a world that can be hard, sad and painful.


You are also entering into a world where families embrace one another, love each other and lift each other up without even a thought.

You are entering into a world filled with talented and promising physicians who fervently care and fight for their patients.

You are entering into a world that needs you desperately. This world leaves parents without their children, kids without their siblings and so many without hope.

Even though this world is not small, affecting 1 percent of families in the U.S. in some degree, it is so devastatingly overlooked.

It needs funding. It needs awareness. It needs loud, influential voices.

It needs you.

As a mother who held her 9-month-old baby girl as she took her last breath after fighting for three months to recover from one of the most difficult open-heart surgeries imaginable, I am begging you to be one of those voices.

Research, alternative therapies and medical advancement have all contributed significantly to the prognoses of CHD patients over the last couple of decades.

And yet, there are still parents who bury their children.

My daughter’s toys are packed away. Her clothes are in boxes. Her crib is empty.

There needs to be less of us. There is so much more we could do for these kids, for their families.

I said goodbye to my baby girl six months ago, and not a day goes by that I don’t feel the weight of her loss, but I have never lost the passion to fight for the CHD community. However, someone like me can only do so much.

Your Monday night monologue shook the nation. You have started something here, and there is something to continue.

I plead with you to maintain the conversation you have started for your son, for the sake of my Sylvia’s memory, for the sake of all CHD families — the ones with empty arms and the ones fighting to keep their children here.

You don’t know me, but there are parts of my heart only you and other CHD parents will ever understand, and I am thankful for your honesty and courage you’ve already shown on behalf of our community.

So many prayers for your family and your son are being lifted for you today.

Christina Schuetz

Four photos, from top left: Father kissing baby's cheek, mother holding baby, baby and older sister, and close-up of baby's face

Photo source: YouTube video

Originally published: May 2, 2017
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