Managing High-Risk Pregnancy in Women with Congenital Heart Disease

Pregnant woman at check-up

When most women think about heart disease during pregnancy, they may think about high blood pressure or other conditions that develop during pregnancy. But for women with congenital heart disease (cardiac disease that is present from birth throughout their lives), pregnancy itself can present potential serious side effects.

Cardiac Complications

Adult congenital heart disease (ACHD) describes a number of different problems affecting the heart. It is the most common type of birth defect, and while some problems can be corrected, they may still require medical supervision throughout a person’s life especially during pregnancy.

“It’s estimated there are more than one million adults with congenital heart disease in the United States,” says Yuli Kim, MD, director of the Philadelphia Adult Congenital Heart Center. “More and more children with congenital heart disease are reaching reproductive age, and need high-risk obstetrical care in collaboration with specialized cardiac care.”

Women with congenital heart disease are seen at the Philadelphia Adult Congenital Heart Center, a joint effort between Penn Medicine and the Children’s Hospital of Philadelphia (CHOP). Together, they serve the unique health care needs of these patients. The center is comprised of specialists in cardiology, cardiovascular surgery, non-invasive imaging, genetics and reproductive services that care for patients with congenital heart disease. The center also offers high-risk obstetrical care through Penn’s Maternal Fetal Medicine Program.

High-Risk Care

“Pre-conception (or pre-pregnancy) care is recommended for any woman who plans to get pregnant,” says Lisa Levine, MD, MSCE, director of the Penn Medicine Pregnancy and Heart Disease Program. Getting to a healthy weight prior to conception and eliminating dangerous exposures such as smoking are emphasized to all women. “But a woman with cardiac disease needs counseling beyond what a woman without cardiac disease may need.”

At Penn, women with a history of congenital heart disease receive pre-conception counseling from a multi-disciplinary team of cardiologists and maternal fetal medicine specialists and geneticists. A maternal fetal medicine specialist is an obstetrician who has received additional training in the evaluation and care of high-risk pregnancies.

A geneticist can help you determine if you are at an increased risk for having a child with a congenital heart defect. The specialist may recommend a fetal echocardiogram during pregnancy to evaluate the fetal heart. In some cases a specific genetic test may be recommended to determine whether the mother and/or fetus has a genetic cause of congenital heart disease.

“It’s important we work together to create a plan and make recommendations to women with cardiac disease,” says Dr. Kim. “Together, we can talk about possible risks, and how to manage cardiac disease during pregnancy.”

Ensuring a Healthy Pregnancy and Delivery

“Congenital heart disease can increase the risk of complications in the pregnancy for both mom and baby. In some forms of structural heart disease, there is a risk of heart failure or other complications that may be caused due to the body’s changes and adaptations to pregnancy,” says Dr. Levine.

With careful planning and prenatal care, the risks of adverse outcomes appear to be very small. In fact, most women with a repaired congenital heart defect can enjoy full-term deliveries and rarely need a cesarean section due to their heart disease.

“Because there are so many variables involved with both a woman’s cardiac condition, pregnancy and delivery,” adds Dr. Levine, “it’s important for women to get their pre-conception and prenatal care from a multi-disciplinary team of experts experienced in managing high-risk pregnancies and cardiac conditions such as the team we have at Penn.”

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