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If Your Child Has a Heart Defect

What Is a Heart Defect?

A heart defect is a problem in the heart's structure. Kids who have a heart defect were born with it (heart defects are often called "congenital," which means "present at birth"). Heart defects are also sometimes referred to as "congenital heart disease."

Heart defects can range from mild to severe.

What Are the Types of Heart Defects?

Types of congenital heart defects include:

How Are Heart Defects Treated?

Children with minor heart defects may not need any treatment. But some babies have serious symptoms that need medical or surgical treatment within the first year of life. These will be done by a pediatric cardiologist (a doctor who specializes in treating children's heart problems).

Procedures done through cardiac catheterization — such as balloon angioplasty or valvuloplasty — can widen an obstructed blood vessel or valve. Another procedure, transcatheter device occlusion, can close abnormal openings or holes within the heart or blood vessels without requiring surgery.

Some problems, such as small- or moderate-sized ventricular septal defects, may close or decrease in relative size as a child grows. While waiting for the hole to close, the child might have to take medicines.

Complex defects might require a series of operations that are finished when a child is about 3 years old.

What Happens After Treatment?

Kids who are treated for a defect (surgically or medically) will need regular visits with a pediatric cardiologist. At first, these appointments may happen often — perhaps every month or two. Later, they might be cut back, sometimes to just once a year.

The cardiologist may use tools like X-rays, electrocardiograms (ECGs), or echocardiograms to watch the defect and the effects of treatment.

Some physical activities might be limited, but kids can still play and explore with friends. Always check with the cardiologist about which activities are OK for your child and which should be avoided. Some competitive sports could be off limits, for example.

Preventing Infection

Infective (or bacterial) endocarditis is an infection of the tissue that lines the heart and blood vessels. In the past, kids with heart defects got antibiotics before procedures that could introduce bacteria into the bloodstream. These include dental work or surgery in body areas where bacteria tend to grow (such as the mouth or gastrointestinal tract).

But now, preventive antibiotics are given only to some children with defects, including those who:

  • have a type of congenital heart disease that causes cyanosis
  • have had infective endocarditis before
  • had their defect repaired with prosthetic material (like an artificial heart valve) or device

The cardiologist will know the latest guidelines, and can advise you based on your child's diagnosis.

Kids with heart defects should take good care of their teeth. They should brush and floss properly, and have regular dental visits and cleanings as often as the dentist recommends.

Looking Ahead

Most heart defects are now treated during infancy. So parents usually will have to explain to an older child what happened in the past. When your child is old enough to understand, explain why he or she has a surgical scar, needs to take medicine, or has to visit the pediatric cardiologist. Describe the treatment in a way your child can understand.

While it can be tempting to be very protective, it's important to help your child lead as normal a life as possible. Talk with your cardiologist or the care team about safe ways to do this — they are there to support your child and the whole family.

It also can be helpful to look for local and online support groups. This can connect you to other families with similar experiences who can share what works for them.

What Else Should I Know?

As kids get older, it's important to help them learn how to take charge of their medical care. A younger teen could fill a prescription or schedule an appointment. Older teens should understand health insurance coverage and know how to access their medical records.

Help an older teen transition from a pediatric cardiologist to one who cares for adults. He or she should play an active role in choosing the new doctor, and can make appointments, ask questions and take notes, and set aside time to speak with the doctor alone.

To prepare for the transition to adulthood and managing their health care, teens should know:

  • about their heart condition
  • when to get care
  • the names of all medicines, their dosages and when to take them, common side effects, and interactions with other medicines
  • if they have allergies to food or medicine
  • the answers to most questions about their health and medical history
  • how to:
    • schedule appointments
    • order refills
    • contact the care team
    • manage medical tasks outside of home
  • the consequences of not following the treatment plan
  • about insurance coverage and to always carry their insurance information with them
Date reviewed: May 2013

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