What My Fellow Moms Don’t Know About My Baby Finally Coming Home

To the Mommas With a Healthy Baby:

I wanted to join your club. Actually, I had no idea I wouldn’t until I was driven to the cardiac intensive care unit approximately 20 hours after giving birth to our little guy.

My son was diagnosed at birth with a rare congenital heart defect called total anomalous pulmonary venous return (TAPVR). He had open-heart surgery and will go on to lead a perfectly normal life, which was the best outcome we could have hoped for. And this is what people tend to focus on when I share his story. I’m grateful for the outcome as well, so please don’t get me wrong. But as soon as you hear he will be OK, you forget what this has done to us and him. Yes, he will be just fine, but I need you to know I’m not fine just yet.

I’m just starting to grieve. My baby went through major surgery. His chest was cut open. The surgeon repaired his heart that was the size of a walnut. You would think I would have been worried about all of this as it was happening, but I wasn’t. I was in denial.

I would walk through the halls of the hospital and (stupidly) think I wasn’t like the rest of the moms in there. My baby was going to be OK. This was just a little bump in his story. We would never have to visit again or have more surgeries, unlike some other patients. We would totally forget about this as soon as he was home with us, nursing like a champ and sleeping through the night.

Little did I know grief would fill the cracks and crevices of my heart. I went home night after night, leaving my baby hooked up to monitors and in the care of nurses. The car seat sat empty in our backseat for weeks. There were no weekly pictures, because he was pale, lethargic and refused to eat.

Kerri Van Eps.1-001

Yes, my child is home now. He’s a happy, healthy 8-month-old. But I missed out on so much. He never learned to nurse. I barely held him for the first few days of his life. I toted him around with an oxygen tank and a feeding tube for months. My maternity leave was spent in the pediatrician’s office or in the wings of the children’s hospital. The weight of what I lost is finally sinking in.

His future is full of hope, but mine feels full of worry. I read blogs and Facebook posts of people who weren’t as lucky as we were, and I fear that our little peanut will be taken from us. That his heart will give out when he’s playing at school. That he will regress and refuse to eat again. That he will need another surgery, or he could have an unknown complication.

Routine cardiology visits remind us our munchkin is doing extremely well, and all signs point to a healthy life for him. No surgeries are in his future. I’m grateful every day, because we could be in a situation where we couldn’t bring our sweet boy home.

So thank you for celebrating his health when I share his story, but please know I may need some time. The scar on my baby’s chest has healed and is fading, but the scars hidden in my heart are still fresh with grief. But I will continue to cling to hope. I hope one day to join your club with my healthy, repaired baby and my healing, but scarred, heart.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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

Related to Congenital Heart Defect/Disease

What I Want Lincoln University's Basketball Team to Know About My Son

Our 7-year-old son, Blaze, was born with a significant heart defect. Basically, he has half a heart. Two weeks ago, Blaze was made an honorary member of the Lincoln University men’s basketball team. The team decided to turn their annual “Welcome Back” celebration, Blue Tiger Fest, into a draft day for Blaze. The coach told everyone [...]

I Felt Safe From Judgment in Hospitals. Then a Stranger Changed That.

I’ve had people stare when they see my scars from my past open-heart surgeries or when I have a coughing fit and have to take medication. But I’m lucky that in the town I live in, most people are aware of all my health issues and know it’s a part of my everyday life. When [...]
A couple looking down at their newborn baby

This Is What It Means to Be a Heart Parent

It took just seven words to change my entire life.  Seven words that broke my heart, shattered my dreams and turned my world upside down.  Seven words from which I emerged a stronger and more compassionate person. “There’s something wrong with the baby’s heart.” In that moment, I felt fear colder and stronger than any [...]
Taylor Swift

Taylor Swift Gave Advice We All Need to Hear to a Fan With a Heart Defect

Thinkstock image Taylor Swift’s been known to treat her fans as friends — the pop star regularly responds to followers across all her social media platforms. Recently, a young woman named Emily wrote Swift on Tumblr, thanking her for helping her see her heart condition in a new light. Her post read: this is something that [...]