To the Parents Who Just Found Out Their Baby Has a Congenital Heart Defect


Dear Friend,

I don’t know you, yet I consider you my friend. You have just gained membership to one of the clubs that no one really wants to belong to. I am a member, too. Our babies were born with congenital heart defects (CHD).

I know you are scared, friend. I know all too well. My first baby was diagnosed prenatally at 21 weeks with a CHD. We were devastated and scared. Our dreams of a “perfect” healthy baby were initially crushed by the news. Following the announcement of “Congratulations, it’s a girl!” was the almost immediate declaration that something was seriously wrong with the structure of her heart. Of course, details would not be available until much later, but the bomb had been dropped.

Our focus was immediately changed from being consumed with selecting nursery colors to being consumed with finding pediatric cardiologists and touring children’s cardiac units and NICUs. With our son, it wasn’t until he was 2 months old that we learned of his CHD diagnosis.

I understand what you are going through right now. I get it. I know you are probably feeling so isolated, but I am here to tell you something very important. You are not alone. Not even close. You may not know this yet, but CHDs are the most common birth defect. Approximately 1 in 100 babies are born with some form of congenital heart defect. I had no idea how common this was until our family was affected.

You will soon come to learn that you have an instant connection to other “Heart” moms and dads. No one understands what you are feeling like other Heart parents. Sometimes it is difficult or impossible to verbally explain what you are feeling – your fears, your questions, your worries. In these cases, please remember that all the other members of our club know exactly what is in your heart.

Our family’s motto for our babies has always been “believe.”

Believe in miracles. Believe in doctors. Believe in yourself and the strength you never knew you had. Just believe.

The advancements in medicine today are amazing, and they continue to evolve every day. It is awe-inspiring what surgeons can do with a heart the size of a baby’s fist. Things were uncertain for our daughter for a while after she was born, and she
has been through a lot, including two open heart surgeries to date. She is almost 6 years old now, and our son recently turned one. Both are doing very well.

Please know support is there if and when you need it. There are many great organizations and online support groups out there for parents like us.

I get it, friend. I am right there with you. So many of us are.

Sincerely,

A Fellow Heart Mom

We want to hear your story. Become a Mighty contributor here.


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


Related to Congenital Heart Defect/Disease

Michelle's daughter in the ICU

Why I Couldn't Remember How It Felt When My Baby Was in Heart Failure

Michelle’s daughter. I’ve wanted to write a post about Tilly’s open heart surgery for a while now – mainly to remind me, and those close to us, how far Tilly has come since the time she was a poorly little baby and in heart failure. My memories of  that time are pretty vague. It was [...]
young woman in a cosplay costume

What Cosplay Means to Me as a Person With a Congenital Heart Defect

I’ve been ill my whole life with a congenital heart defect. I had surgery when I was 15, and when I was 16, I discovered the world of cosplay, which was four years ago. My best friend invited me to a cosplay convention and told me to try it, too. Since I had fun, I decided [...]
A member of Lincoln University’s men’s basketball team helping Joy Gilzow’s son, Blaze

When People Cheered for My Son With a Congenital Heart Defect

Today, a group of young men demonstrated what it was like to be a part of a team. They extended warmth and grace. They had fun and supported their youngest teammate and the community in general. For those of you who might not know our story, our son, Blaze, was born with basically half of [...]

To Those Who Said Photos of My Heart Surgery on Social Media Might 'Scare Away' Girlfriends

Living with congenital heart disease, one can often hide behind the wall of invisibility. Most everyday people don’t know that I have Tetralogy of Fallot, and they don’t necessarily need to. While this potential to appear to be completely healthy can seem beneficial at times, it is a false representation of who I am. I am someone who [...]