What it Means to Have a Child With a Congenital Heart Defect


Being a heart mom means:

Sometimes you may break down for no reason at all.

It means constant struggles and phone calls to insurance companies and doctors and still getting no answers.

It means your own heart is broken daily.

It means trying to make a “normal” life for your family when it’s anything but “normal.”

It means your child falling asleep in the back seat of the car, not because it’s nap time, but because her heart worked so hard in physical therapy that she physically could not stay awake.

It means machines, oxygen readers and medications. Oh the medications!

It means friends who don’t understand. The friends who actually stay by your side are few.

It means having to be strong when you feel like falling apart.

It means crying in the car while I punch my steering wheel in the parking lot of the hospital because in less than one week, I will schedule my 2-year-old daughter’s third open-heart surgery. Grief can be like that. It literally comes out of nowhere for no reason at all.

Congenital heart defect is not fair. It doesn’t discriminate. One in 100 babies are affected by a defective heart, and my daughter is one of them. Our lives will never be easy, but it is worth it!

For those of us who parent a child with CHD, we know what it is like to sleep in a hospital chair for weeks on end. We fight for what’s right. We may look at life in a completely different way. We are the moms who look at our children and despite all the struggles can confidently say to the world, “How did I get so lucky to have this child?”

It’s OK to cry mamas, you’re not alone.

Follow this journey at Emily’s Heart.


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