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.

Find this story helpful? Share it with someone you care about.

Related to Congenital Heart Defect/Disease

Stuffed cat with a scar across the heart, symbol of heart surgery.

How I've Learned to Embrace All My Scars

I always found it funny when I saw people so clearly looking at my scars and not being able to ask me about them. They would stare and then look away in the hope I hadn’t noticed them glancing at my chest. I could never understand why they couldn’t just be brave and come straight [...]
doctor holding a plastic heart in his hands

A Physician's Perspective on the Miracle of Organ Donation

By Dr. William T. Mahle Some children, including those with congenital heart disease, can develop progressive weakness of the heart. This results in heart failure. Heart failure is usually evident by the inability of the heart to meet the body’s demands. For children, this might be seen in difficulty keeping up with their peers or [...]
A woman playing with a child with an IV port in her arm.

How Volunteering at a Children's Hospital Changed My Perspective of Chronic Illness

A precocious little girl I had been playing games and drawing pictures with came running off of the elevators right behind me and loudly yelled down the hallway, “Thank you for being so nice to me! Can I give you a hug?’’ My eyes began to fill with tears as I said, “Of course you [...]
woman sitting on a hospital bed in a gown

Post-Op: What I Learned After Having Major Surgery

If you have ever had a major surgery, then you are probably very familiar with the recovery process. The recovery process can consist of weeks of physical therapy and many medications. After surgery, you are given instructions to take home and figure out what to do and what not to do for your healing. Most [...]