Hearing from a pediatrician that your baby has a Congenital Heart Defect (CHD) is a terrifying moment, but there has been recent research that is allowing children with CHDs to live longer and healthier lives. 

CHDs are the most common type of birth defect, affecting nearly one percent of births per year in the U.S., states the Centers for Disease Control and Prevention (CDC). 

An infant’s heart is the size of a plum, and doctors, researchers, and other health professionals are searching for answers regarding CHDs. Dr. Immanuel Turner, the Chief of Pediatric Heart Surgery at Rocky Mountain Hospital for Children, operates on infants with heart defects. 

“The terrifying component of it never leaves. If it does leave, then I probably don’t need to do this anymore,” Dr. Turner says. “The rewarding component, obviously years of training to make sure we can do this at a really high level, is a key piece, but the reward is seeing the patients get better.” 

When patients and their parents return to the post-op clinic, moms have said that this is the 2.0 version of their baby because they’re kicking, rolling over, and have so much more energy, Dr. Turner says. 

“From a care standpoint, we’re trying to cultivate that relationship with the parents as a part of our care team,” Dr. Turner says. “It really helps the rest of the ICU, surgery, cardiology, to make sure that after we get the patient through the surgery that they really continue to thrive.”

What causes CHD?

There are still unknowns about CHDs, including there is not a direct cause-and-effect relationship for us to know exactly why the defect develops. 

“If you think about the multitude of steps to help the developing heart, either one of those steps can cause a potential congenital heart defect to form,” Dr. Turner says.

Even though there are no clear causes, there are preventative measures parents can take, for example, not smoking during pregnancy. 

“CHDs also are thought to be caused by a combination of genes and other factors, such as things in the environment, the mother’s diet, the mother’s health conditions, or the mother’s medication use during pregnancy,” states the CDC. “For example, certain conditions a mother has, like pre-existing diabetes or obesity, have been linked to heart defects in the baby.”

How Do Doctors Detect CHD?

“For those that have critical heart disease, about 15 percent have a genetic component. Now, that’s what we actually have the ability to test for,” Dr. Turner says. “As we continue to develop the tests, even in the last 5 to 10 years, [we’ve] identified other gene sequences that either have deletions or duplications that are involved with certain genetic or certain congenital defects.”

Children are living longer and healthier lives because medical facilities can catch the defect sooner and sooner. From anesthetic to the Intensive Care Unit, this early detection allows the medical team to better plan for when the baby comes out of the womb. 

“The combination of those has really helped us be able to take on some of the more complex congenital heart defects and have them be able to survive,” Dr. Turner says.

According to the CDC, about one in four babies with this defect have a critical CHD. Typically, critical CHD will require surgery within the first year of life.

What to Look Out For?

“Some of the symptoms parents and even the patients can look for are shortness of breath, changes in what you think fitness level would be, being able to keep up with peers, and feeling your heart race. All of those things, probably as they progress, are things you want to get worked up and at least go to your primary care doctor,” says Dr. Turner.

Keeping a relationship with your child’s pediatrician is vital because not every child is diagnosed at birth. Identifying heart defects early on will improve a child’s livelihood and outcome.