Congenital Heart Defects

Good news: Most congenital heart defects are not serious. We’ve got answers to your biggest questions about baby’s congenital heart defects.
ByJennifer L.W. Fink
Registered Nurse
September 15, 2020
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What are congenital heart defects in babies?

“Baby’s heart develops very early in pregnancy,” says Katherine O’Connor, MD, a pediatric hospitalist at The Children’s Hospital at Montefiore in New York City. “A congenital heart defect occurs when the heart doesn’t form just right. There might be a hole somewhere, a valve that’s not working correctly, or some of the vessels that come off of the heart may not be attached correctly.”

The vast majority of congenital heart defects are not serious. “Probably the most common one is what most people call a hole in the heart, otherwise known as a ventricular septal defect,” O’Connor says. Kids with a ventricular septal defect have a tiny hole in the wall between the two ventricles, the lower chambers of the heart. The hole almost always closes as the child grows and doesn’t cause any problems. 

More serious congenital heart defects include transposition of the great vessels, hypoplastic left heart syndrome, pulmonary valve stenosis and atrial septal defects.

What are the symptoms of congenital heart defects in babies?

Some congenital heart defects are apparent at birth. If the baby is bluish and seriously struggling to breathe, doctors will probably suspect a congenital heart defect.

Other heart defects show up later. Sometimes they’re found a few months after birth, when the concerned parents and physician start investigating why a child isn’t eating well or gaining weight. Other congenital heart defects are found after a doctor hears a heart murmur during a child’s routine checkup. Most heart murmurs are not serious, but they can indicate a structural problem with the heart. “Pediatricians are trained to know which murmurs are concerning and which ones are not,” O’Connor says. If your child’s pediatrician suspects a problem, they’ll refer your child to a pediatric cardiologist.  

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Are there any tests for congenital heart defects in babies?

There are several:

An echocardiogram — essentially an ultrasound of the heart — is used to look at the structures of the heart. Doctors can also observe the movement of blood through the heart during an echocardiogram.

A chest X-ray may also be used to visualize the heart.

An EKG may be done to examine the electrical activity of the heart. (Electrical signals from the heart tell it when to contract.)

Echocardiograms, chest X-rays and EKGs are all noninvasive procedures that can be performed in a specially equipped office.

Rarely, a doctor may perform a cardiac catheterization, an invasive procedure that involves threading a small flexible tube up into the heart to measure pressure and blood flow.

How common are congenital heart defects in babies?

About 1 out of every 125 babies has a congenital heart defect. The vast majority of the heart defects are not serious.

How did my baby get a congenital heart defect?

Most of the time, no one knows how or why a particular baby develops a particular heart defect. Some heart defects are caused by prenatal exposure to certain medications or germs. (Exposure to German measles in the first few months of pregnancy increases the risk of heart defects in the baby.) Other heart defects are thought to be linked to genetic mutations. Chronic illnesses in the mother, such as diabetes, may also increase the risk of congenital heart defects.

What’s the best way to treat congenital heart defects in babies?

Some congenital heart defects don’t need treatment; the child will simply “grow out” of them.

Other congenital heart defects will require surgery to fix the defect. “There has actually been a lot of progress in this area over the past 15 years or so,” O’Connor says. “Many heart defects can now be treated through less-invasive catheter procedures, which don’t require opening up the chest.” Some of the most serious heart defects still require open-heart surgery.

Your child’s doctor will work with you and the medical team to determine the best treatment for your child. Most kids with major heart lesions are treated at specialized hospitals that have teams of experts, including physicians, nurses and social workers, to help you navigate through this tough time.

What can I do to prevent my baby from getting a congenital heart defect?

Usually, you can’t. But you may be able to decrease your chances of having a baby with a congenital heart defect by taking a prenatal vitamin that includes folic acid before conception and in early pregnancy. It’s also important to make sure that your immunizations are up-to-date and that any preexisting medical conditions are well-controlled before and during pregnancy.

What do other moms do when their babies have a congenital heart defect?

“My son was born with a CHD. We talked with the cardiologist monthly from 22 weeks into my pregnancy on. By probably month seven, we had a plan for what was going to go on after birth. He does have a chromosome abnormality that we didn’t find until after he was born. But they don’t think it caused his heart defect since my husband has it as well.”

“My son has a ventricular septal defect. He’ll see a cardiologist every six months until he’s five. Hopefully, it’ll close up in that time, but if it doesn’t, he’ll then need to see his cardiologist every one to two years. His doctor said that he should be able to live a completely normal life!”

“My daughter has a CHD (complete atrioventricular septal defect and patent ductus arteriosus). Her PDA has been repaired, but her AVSD has not been repaired yet. I have…a book at home that has all heart defects in it and how they are repaired. The book is called It’s My Heart from The Children’s Heart Foundation.”

Are there any other resources for congenital heart defects in babies?

The Bump expert: Katherine O’Connor, MD, a pediatric hospitalist at The Children’s Hospital at Montefiore in New York City

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