Growing Up with Congenital Heart Disease (CHD)

Many adolescents can be intensely focused on their outward appearance, and if you are a teen with CHD you may be no different.

Puberty and CHD

Puberty, ages 10-15, is a time of rapid growth and hormonal changes within your body, which causes changes to your physical appearance. As a teen with CHD, you may notice your body developing slower than your peers. We have learned that having multiple surgeries when you were younger might make you hit puberty a little later than your friends.  All teens develop at their own pace though, so this is ok.

Body Image 

Because puberty results in changes to appearances, you may begin to view your body differently.  In addition to coping with the physical changes brought on by puberty, you may experience some additional concerns.  Certain heart conditions can cause you to live with symptoms that are obvious to others, such as constant cyanosis (blue tinted lips and nail beds) or feeling tired.3 Surgical scars, and the need for medical therapies such as oxygen or feeding tubes may make you feel different from others. If this affects your self-esteem and body-image you may feel very self-conscious about yourself.  Many of your peers (even those without CHD’s!) also have insecurities about their bodies. It is helpful to know that you are not alone, and you should feel comfortable talking to a trusted adult and/or your doctor about any concerns you have.

Building Self-Confidence

  • If you find yourself feeling down some days, there are things you can do to boost your self-confidence and self-esteem:
  • Express concerns you have about your physical appearance to those closest to you. These individuals understand your illness and can help with solutions.
  • Be sure to educate yourself on possible effects of treatment and seek out options for ways to cope with or eliminate side effects. Make sure your cardiologist is aware of these concerns and can help you to manage any possible interactions with other medicines or treatments.
    For example, acne concerns might be managed with the help of a dermatologist, by changing the drug dose, or by switching drugs.
  • Discuss with a parent/guardian ways to answer questions people may ask you about your appearance.
  • Be proud of your heart. Not many people in the world can say that they have such a special and unique heart!
  • Try to get involved in activities in which you take pride in (such as music or art). This may help to avoid focusing too much on concerns you may have about your outward appearance. 3
  • Talk with your doctor about recreational sports or clubs you can get involved in.

Birth Control and Pregnancy 

Birth control may be a topic that you have questions about as you get older. If you are female with a CHD you should talk with your doctors and parents about what type of birth control would be the safest for you. For the most part, women with CHD can safely use the majority of methods; please see the brochure at the end of this section.  However, some women based on the type of heart defect they have, may need to avoid certain types of birth control, such as birth control pills or intrauterine devices (IUDs).2 

Many women who have simple heart defects, or even those that have more complex heart defects, can have normal pregnancies and deliveries.  If you want to become pregnant (or are pregnant) talk with your doctors about the health risks. You should consult with doctors who specialize in treating pregnant women who also have congenital heart defects.It is important to remember you may be at higher risk than other women of having babies who have congenital heart defects.2

If you are pregnant, you need to be monitored carefully throughout the pregnancy by an obstetrician and a cardiologist specializing in adult CHD.  You will need to have a fetal echocardiogram (echo). This test uses sound waves to create images of your baby's heart and is done early on in the pregnancy before your baby is born.2 Fetal echo gives the doctor information about the size and shape of your baby's heart. This test also shows how well the heart’s chambers and valves are working.2

  1. Cincinnati Children's - Emotional and Family Issues Related to Children with Congenital Heart Disease
  2. NHLBI - Living With a Congenital Heart Defect
  3. aboutkidshealth - Body Image