Doctors typically diagnose congenital conditions during or before birth. In some cases, these conditions may affect the heart. Some people may have severe symptoms and a short life expectancy, while others may live well into adulthood.

Congenital heart disease (CHD) is a heart abnormality that doctors diagnose in newborns. People with CHD may present with different symptoms depending on the type of abnormality they have. Different types of CHD require specific interventions, such as surgery.

Early diagnosis and treatment may help improve survival rates and life expectancy.

Keep reading to learn more about adult CHD.

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While doctors diagnose CHD in newborns, many people born with heart abnormalities reach the age of 60 years old.

CHD is a general term that encompasses many diagnoses, and each type requires different care. While doctors can repair some abnormalities, CHD is a chronic disease that requires lifelong treatment.

Older adults with CHD have different needs than younger people with the condition.

For example, adults may have other diseases that complicate their heart problems, such as diabetes. Age also increases a person’s risk of developing an arrhythmia, which affects how the heart beats.

People with CHD can live into adulthood due to advances in diagnostics and treatment.

Because CHD is a lifelong condition, people may have to deal with:

  • hospitalizations
  • medical emergencies
  • repeat surgeries and other medical interventions
  • recurring symptoms of CHD
  • pregnancy complications
  • high blood pressure
  • an abnormal heart rhythm, or arrhythmia
  • a low life expectancy compared with the general population
  • stroke
  • neurological complications
  • a lifelong need for medications
  • infections of the heart lining
  • exercise intolerance
  • depression

Older adults may also experience a change in how they respond to certain drugs. Over time, doctors may need to adjust certain heart medications.

Some people may experience symptoms that are commonly typical in older age sooner. These symptoms may include

  • falls
  • behavior changes
  • changes to the senses

A common complication of adult CHD is heart failure, which can lead to death.

Other nonheart complications that occur during adulthood include mental and emotional well-being issues. Eventually, people may also need end of life support.

Types of heart abnormalities that occur in people with CHD include:

  • Atrial septal defect: A hole in the wall that divides the atria of the heart.
  • Bicuspid aortic valve: This occurs where the aortic valve has two flaps instead of the typical three.
  • Congenitally corrected transposition of the great arteries: This develops where the heart twists in during fetal development.
  • Coarctation of the aorta: This involves the narrowing of the aorta, the main artery in the body.
  • Ebstein’s anomaly: This is where a valve in the heart cannot close properly.
  • Eisenmenger syndrome: This condition can affect blood flow from the heart to the lungs.
  • Pulmonary stenosis: This involves the narrowing of the pulmonary valve in the heart.
  • Single ventricle defects and the Fontan: This rare condition occurs when the ventricle, a chamber in the heart, does not develop properly.
  • Shone syndrome: This occurs when there are four heart abnormalities or obstructions that affect the left side of the heart.
  • Subaortic stenosis: This occurs when blood flow from the ventricles becomes restricted.
  • Tetralogy of Fallot: This comprises four heart abnormalities that affect blood flow through the heart.
  • Transposition of the great arteries after arterial switch or Rastelli procedure: A complex abnormality that means the pulmonary valve and aorta become reversed.
  • Transposition of the great arteries after Mustard/Senning repair: When two major arteries in the heart become reversed.
  • Truncus arteriosus: This abnormality occurs when one vessel leaves the heart instead of the typical two.
  • Ventricular septal defect (VSD): A hole in the wall that separates the ventricles of the heart.

The most common type of CHD that doctors diagnose in babies is VSD. With VSD, people have a hole in the wall that separates the ventricles of the heart.

In this condition, blood will flow from the left ventricle to the right ventricle and then travel to the lungs. This causes the heart and lungs to work harder than usual. Babies can have different types of VSD depending on the location and number of holes in the wall.

Risk factors for the fetal development of CHD include:

  • certain vitamin and mineral deficiencies during pregnancy
  • diabetes during pregnancy
  • illnesses causing fever early in pregnancy
  • a family history of CHD
  • systemic lupus erythematosus in the pregnant individual
  • previous abortions and stillbirths
  • advanced age of the biological parents
  • exposure to certain drugs during pregnancy

Today, people with CHD can age well into adulthood.

With further advancements in care, people with CHD can live longer lives. However, their survival still depends on the severity of the abnormality, early diagnosis, and treatment.

According to the Centers for Disease Control and Prevention (CDC), approximately 97% of babies born with nonsevere CHD survive to 1 year of age. Additionally, the number of people with CHD is increasing because 95% of individuals with nonsevere CHD live to 18 years old.

Among children born with severe CHD, 75% live to 1 year and 69% live to 18 years.

Experts do not know the causes of CHD. Studies suggest that environmental or genetic causes may be responsible for CHD in only 20–30% of cases.

Some abnormalities occur from changes in genes or chromosomes. Environmental factors, such as the birthing parent’s diet, medications, or health conditions during pregnancy, may cause certain abnormalities. Experts have also linked smoking and certain drugs to heart disease in babies.

Since doctors have identified many different types of CHD, the symptoms depend on the type and severity of the abnormality. Some cause no symptoms.

Other abnormalities may cause the following symptoms in babies:

  • excessive sleepiness
  • low energy when feeding
  • fast or difficult breathing
  • cyanosis — a bluish tint on lighter-toned skin or lips, but this may appear gray or whitish on darker skin

The most frequent symptoms of CHD in adults are exercise intolerance and heart palpitations.

Experts suggest that most adults with CHD can tolerate pregnancy. Still, people with complex CHD are at a greater risk they become pregnant.

Complications may arise during pregnancy, including:

  • early labor
  • pre-eclampsia, which involves high blood pressure during pregnancy and after labor
  • hemorrhage
  • pregnancy loss
  • prematurity
  • death

However, due to advances in care for pregnant people with CHD, the mortality in these groups is 1% or lower.

In Western countries, heart disease is the most common cause of death during pregnancy. However, CHD is a rare cause of death among pregnant individuals. About 11% of people will experience pregnancy complications because of CHD.

Another consideration for pregnant people with CHD is the effect of certain medications on the fetus.

Those who are pregnant should not take angiotensin-converting enzyme inhibitors and angiotensin II receptor blockers. Additionally, pregnant people taking anticoagulants, such as warfarin (Coumadin), need special attention.

Before becoming pregnant, people should consider prepregnancy counseling to ensure the safety of both the birthing parent and child. A healthcare team consisting of a CHD specialist, an obstetrician, and an anesthesiologist can help create an appropriate care plan.

Some tests doctors perform to diagnose and evaluate CHD include:

  • auscultation of the heart, which involves listening to the organ’s sounds
  • blood pressure monitoring
  • EKGs
  • pulse oximetry
  • chest X-ray and other medical imaging

Many people living with CHD may still experience symptoms even if doctors repair their abnormalities. Over time, complications of CHD may occur, such as:

  • arrhythmia
  • heart infections
  • weakness of the heart muscle, or cardiomyopathy

To manage CHD in adulthood, people need to routinely consult a CHD specialist for checkups. Some people may also need additional surgeries.

Babies born with CHD are now living longer and reaching adulthood. This presents new challenges for CHD specialists since adults, especially older adults, may have other medical problems that increase the risk of complications.

For example, people with CHD typically tolerate pregnancy well but also require a team of specialists to prevent complications.

Managing CHD in adults depends on the type of abnormality and may require a combination of medications, medical interventions, and additional surgery.