What Is Congenital Heart Disease — and Could My Child Have It?

The development of an unborn baby is a complicated process. Many things have to happen for all of a baby’s body parts to form properly. If they don’t, the baby might not be able to survive outside the womb. 

The way an unborn baby’s heart develops is nothing short of amazing. A few specialized cells multiply and change until a full working heart — complete with chambers, valves, blood vessels, and muscular walls — sits inside the unborn baby’s chest. 

But what happens when something goes wrong during development? When the fetal heart doesn’t form correctly, a baby can be born with big problems. 

What are the types of congenital heart disease, how do you know if your baby has it, and is there any way to prevent it? 

What is congenital heart disease (CHD)?

When a baby’s heart doesn’t form correctly — and the baby has medical problems as a result — that is congenital heart disease.

There is not just one type of CHD. Since many things can go wrong during the development of the heart, congenital heart disease can show up in many different ways. 

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Some types of congenital heart disease are life-threatening right away. Other types might take some time to show up. Occasionally, congenital heart disease is so mild that a person might live for many years and not even know they have it.

What causes congenital heart disease?

There are many things that can cause problems during the development of a baby’s heart, including:

• The baby’s genetics

• Medical problems related to the pregnancy, like a thin placenta

• Medical problems the pregnant parent had before, like lupus or diabetes

• Exposure to certain illnesses during the prenatal period, like rubella

• Exposure to tobacco, alcohol, or drugs during the prenatal period

• Exposure to certain medications during the prenatal period, like isotretinoin (Accutane)

• Environmental exposures during the prenatal period

• Bad luck 

What are the common types of congenital heart disease?

There are many different types of CHD. They all have pretty complicated names, which relate to the structures in the heart that are affected. Mostly, congenital heart disease affects the valves in the heart, the walls between the chambers, or the structure or positioning of the major blood vessels. 

Some of the most common congenital heart abnormalities are:

• Atrial, ventricular, or atrioventricular septal defect

• Pulmonary valve atresia or stenosis 

• Coarctation of the aorta

• Tetralogy of Fallot 

• Transposition of the great vessels 

• Hypoplastic left heart syndrome

• Double-outlet right ventricle

• Tricuspid valve atresia or stenosis

• Total anomalous pulmonary venous connection

• Single ventricle

• Truncus arteriosus

It’s hard to say which types are most serious. Every baby’s heart is different, so a problem that is mild for one person might be severe for another. The particular structure of a person’s heart will determine how big of a problem the CHD is.

How is congenital heart disease diagnosed?

CHD can be diagnosed in a number of different ways. Since it’s common and can be life-threatening, a variety of screening programs are designed to catch it early.

Congenital heart disease diagnosis before birth

Even before birth, an unborn baby’s heart is working to move blood through the baby’s circulation. Sometimes, a prenatal ultrasound will show problems with the way the heart is working. Other times, genetic testing can suggest there could be a problem. 

Congenital heart disease diagnosis shortly after birth

When a baby takes its first few gulps of air outside the womb, its lungs and heart need to be ready to go. But if the heart doesn't develop correctly, severe problems can show up in these first moments of life — or in the hours or days that follow. 

Screening programs, including physical exams and a pulse oximetry test, are done in hospital nurseries and birth centers to catch heart problems before they become dangerous.

Congenital heart disease diagnosis at a later date

It’s possible for some heart problems to go unnoticed for months or even years. 

CHD in older babies, children, and adults can show up as:

• Fatigue

• Breathing problems or chest pain

• Poor feeding or slow weight gain (especially in young babies)

• A blue color of the skin or lips

• Irregular heart beats

• Fainting or passing out

Every once in a while, CHD is only discovered because a person has a life-threatening event, or because they die unexpectedly. This is a devastating scenario. Screening programs — including checkups, sports, work, and military physicals — are in place to help catch CHD before it becomes dangerous.

How is congenital heart disease treated?

The treatment for CHD depends on the particular way the heart developed. 

Treatments include:

• Surgery to correct the pathways that carry blood inside the heart 

• Treatment (ablation or ballooning) via a catheter that enters the heart through a vein

• Medications to help take strain off the heart

• Heart transplant

People with CHD need individualized treatment. Everyone’s situation is a little bit different. Planning a heart-repair surgery requires a team of doctors and surgeons who can discuss the particulars of what the heart is doing wrong and come up with a plan for making the heart work as well as possible.

Whether surgery is needed or not, a person with CHD will require specialized care throughout their life. That’s because the heart grows and ages over time, and a problem that started out small can become a much bigger issue as years go by.

What is the prognosis for someone with congenital heart disease? 

There is a wide range in how well people do with CHD. For some people, the problem is relatively mild and they can lead fairly normal lives. Some require certain restrictions, such as avoiding strenuous sports or other activities. Others might need multiple surgeries at different points throughout their lives. 

Still, others with CHD are more severely affected. Even with the advanced techniques and equipment available today, some types of CHD are life-threatening in the first few hours or days of life. 

On top of all that, a person’s long-term prognosis is also affected by how their particular heart grows and changes over time.

Can congenital heart disease be prevented?

Right now, there is no definite way to prevent congenital heart disease. That said, there are things you can do to lower the chances of your child having CHD:

• Discuss any medical conditions you have, and all medications you take, with your healthcare provider before you get pregnant.

• Get good prenatal care throughout your entire pregnancy.

• Understand your baby’s genetic risks and connect with specialists early when needed.

• Stay as healthy as possible both before and during your pregnancy.

• Avoid tobacco, alcohol, and drugs during your pregnancy.

• Ensure your baby receives the recommended screening tests — including a pulse oximetry check and a careful physical exam — at birth.

Early detection of congenital heart disease means that many cases of CHD can be caught before they become life-threatening. This gives specialists the chance to discuss all the options thoughtfully, before there is an emergency.

Prenatal (fetal) heart surgery is sometimes an option for babies with certain types of CHD. This cutting-edge solution can be lifesaving, but it isn’t always possible, and it comes with significant risks — including other severe medical problems or death — of its own.  

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Written by:

Kerry R. McGee, MD, FAAP

Kerry McGee, MD, FAAP, has over a decade of experience caring for babies, children, and teenagers as a primary care pediatrician. She has a special interest in adolescent health, particularly in adolescent mental health.

Edited by:

Sophie Vergnaud, MD

Sophie Vergnaud, MD, is the Senior Medical Director for GoodRx Health. An experienced and dedicated pulmonologist and hospitalist, she spent a decade practicing and teaching clinical medicine at academic hospitals throughout London before transitioning to a career in health education and health technology.

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