The Most Common Birth Defect: CHD Awareness Week

Congenital heart defect awareness week is February 7-14. In that week (and every week), 705 babies will be born in the United States with a congenital heart defect (CHD). A CHD is a heart problem that’s present at birth. It happens to 1 out of every 100 newborns. That’s about 40,000 babies every year, just in the United States. CHD is the most common birth defect.

Almost all of us know someone affected by CHD. But not everyone knows the facts.   
This awareness week, let’s start with information.

What Everyone Should Know About CHD

Here are the 5 facts that everyone should know about congenital heart defects, and how they affect people.

1. CHD Is Lifelong

When you say congenital heart defect, most people think of a newborn. But as those babies grow into children and adults, they still need care for their CHD. CHDs are lifelong conditions that need ongoing monitoring and treatment. That’s why UVA Health offers a CHD clinic for adults. We treat patients of all ages with CHD.

2. It Can Happen to Anyone

Some CHDs run in families. But most happen in families with no history or risk factors. About 15% of CHDs have a genetic link. So if someone in your family has had a CHD, you should look into genetic counseling and testing.

3. We Don’t Always Know Someone Has a CHD When They’re Born

Fortunately, with improving technology, we’ve gotten much better at catching CHDs. But in some cases, people reach adulthood without knowing they have a CHD. In fact, CHDs remain the leading cause of unexpected adult heart deaths for people under age 35.

4. It Impacts More Than Your Heart

Congenital heart defects can affect more than just the heart. When other organs are affected, you can get complications like hearing loss or trouble breathing. Many children with CHDs also may have developmental disabilities or delays.

5. It’s Worldwide

Even though a lot of our focus during CHD week is on the United States, CHDs happen everywhere. That makes it a huge issue in terms of health equity.

More Treatments Than Ever

At UVA Health Children’s, our congenital heart defect program has been a top priority — from finding CHDs early with fetal echoes to expanding treatment options. For some of the most common heart defects, we can offer minimally invasive options. POLeR is our treatment for 2 common septal defects, sometimes called a “hole in the heart.”

For other conditions, devices can be used to help keep the heart beating despite serious problems. Ventricular assist devices, or VADs, come in a wide variety of options, each perfect for a different scenario. And by making sure our patients have access to every option, we can offer the highest quality of treatment to every patient.

But for just a few, these treatment options won’t be enough.

Heart Transplants in Virginia

This year 40,000 children will be born with congenital heart defects. Of those, 10,000, or 25%, will have a critical congenital heart defect. This means they’ll need treatment before they turn 1. Fortunately, treatment is usually successful. But sometimes, these defects are inoperable and a child needs a new heart from a donor.

Each year, roughly 500 pediatric heart transplants are performed, and more than half of those are for CHDs. In 2023, UVA Health Children’s performed 18 pediatric transplants. This puts us in the top 5% of pediatric heart transplant centers nationally.

Just a little over a decade ago, many children had to leave the state for a heart transplant. Now Virginia’s kids can get a heart transplant at UVA Health where we have better than national average outcomes.

Thriving With CHD

The biggest question parents have when their child has a CHD is what the rest of their life will look like. And the truth is, that’s up to them. With the improving treatment options for CHDs, it’s more likely than ever that they’ll live a long life.

And while they’ll need additional checkups (especially before playing sports or trying for pregnancy) that doesn’t mean their CHD will be a limitation.

People with CHD have become professional soccer players, snowboarders, actors, musicians, dancers, and more. With improved treatments and follow-up, there are more possibilities than ever for people with CHD.