Congenital heart disease refers to the health problems that come from having a congenital (present at birth) heart defect. Congenital heart defects are among the most common birth defects. The heart begins developing at conception and is fully formed by eight weeks gestation. A congenital heart defect can develop at any time during those first eight weeks of fetal development.
There are many types of congenital heart defects, and they can generally be categorized into three groups:
While each defect can affect a different part of the heart, many symptoms of congenital heart disease are similar and can include:
In some cases, multiple defects may be present, which can cause more complications. One type of congenital heart disease that involves multiple defects is called hypoplastic left heart syndrome (HLHS). Hypoplastic left heart syndrome occurs when the left side of the heart does not develop correctly. The key structures of the heart that are responsible for pumping blood throughout the body—the left ventricle, mitral valve, aorta and aortic valve—are small and undeveloped instead of being healthy and strong. This stunted development makes it difficult and sometimes impossible for the heart to pump enough blood throughout the body and into the brain without immediate treatment to save the baby’s life and reduce the risk of developmental issues caused by low oxygen.
In many cases, it is possible to identify congenital heart defects before birth with a prenatal ultrasound, confirmed with a fetal echocardiogram. An expectant mother’s care should be carefully managed when her unborn child is diagnosed with congenital heart disease. Fetuses with congenital heart defects have higher risk for poor fetal growth and stillbirth. Physicians minimize these risks using ultrasound and fetal heart rate monitoring to keep a close watch during pregnancy. Prenatal diagnosis allows a carefully planned delivery at a hospital such as Riley Hospital for Children at IU Health, which is equipped to provide the level of care that may be needed at birth.
Routine ultrasounds in low-risk pregnancies can identify approximately 50 percent of congenital heart defects in unborn babies. Mothers with high-risk pregnancies should have more extensive testing. Detailed ultrasounds are recommended for pregnancies with increased risk because they can detect 70 to 80 percent of congenital heart defects in babies, as well as other birth defects. Pregnant women with specific risk factors for having a child with congenital heart disease or those who have a concerning result on a routine or detailed ultrasound should have a fetal echocardiogram, which can detect over 90 percent of congenital heart defects in most pregnancies.
Heart defects come in hundreds of variations. The Riley Heart Center is among the nation’s top 15 high-volume sites for advanced care of congenital heart conditions, such as:
The state of Indiana requires all newborns to be screened for congenital heart disease before they go home even when they do not show symptoms. If a defect is not identified prenatally, but your baby shows signs of congenital heart disease during a physical exam immediately after delivery, the following tests can help doctors make a diagnosis:
From unborn and premature babies, to adults with congenital heart disease, the Riley Heart Center is one of the nation’s most respected sites for diagnosis and treatment of heart disease all through life. We have a full suite of diagnostic technology, including fetal echocardiograms, transthoracic echocardiograms, cardiac catheterizations, cardiac MRIs, EKGs, and stress testing to diagnose heart problems.
If your baby is born with a heart defect, he or she will require specialized treatment in the cardiovascular intensive care unit and/or the neonatal intensive care unit (NICU). When a defect is identified prenatally, you will meet with a multidisciplinary team that will include a combination of pediatric cardiologists, cardiovascular surgeons and maternal-fetal experts before your baby is born. Your baby's care team will develop a management plan and discuss treatments your baby will receive in the NICU.
Most heart defects are corrected with one or more surgeries, sometimes performed in stages. Some surgeries occur only after your baby's condition is stabilized in the NICU. Infants in the NICU may also be treated with the following:
Some babies born with very complex heart disease, such as hypoplastic left heart syndrome (HLHS) may eventually need a heart transplant. The Riley Heart Center is one of only 30+ sites in the United States certified to perform pediatric heart transplants. We are also one of the nation’s few sites trained to implant total artificial hearts for babies and children. A pediatric cardiologist will work with you and your baby to determine which defects are present and what procedures are best for your child’s unique needs.
The Cardiovascular Neurodevelopmental Follow-Up Program at Riley at IU Health provides specialized long-term care to babies and children with HLHS. Your child will receive individualized care and support after each surgery. As he or she develops, the program's multidisciplinary care team will also address the common side effects of HLHS, including feeding problems, reduced physical strength and neurodevelopmental problems.
Visit the following trusted websites to learn more about congenital heart disease.
Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.
The Centers for Disease Control and Prevention provide in-depth information about HLHS.
This National Institute of Health website provides information to the public about congenital heart defects.
Pediatric cardiologists and surgeons at the Riley Heart Center are instrumental in finding better treatments for congenital heart disease, discovered through research. Our heart specialists also work closely with researchers at the Herman B Wells Center for Pediatric Research to study genetic markers that provide clues about the origins of heart defects. Talk to your child’s doctor if you would like to know more about available studies and to learn if your child qualifies for participation in clinical trials.
