Treatment advances in recent decades have markedly changed what it means to be born with a congenital heart defect. Approximately 95% of children born with noncritical congenital heart defects are expected to survive to adulthood, while only 69% of children born with complex congenital heart defects survive to adulthood.1
If you’re a member of these newer generations of adults with congenital heart disease (CHD), you may have arrived at adulthood with questions about the safety of pregnancy and delivering a baby. For some, pregnancy is as safe for those born with heart defects as for those born with a normal heart. Pregnancy may carry high risks for those with severe CHD for both the mother and the baby. In these cases, it may be possible to give birth if coordinated and specialized care is developed with a cardiologist and an obstetrician.
Important notes about pregnancy and congenital heart disease
Growing up, you may have heard that you “can’t get pregnant if you have CHD.” This statement requires clarification from your care team. Some may interpret statements such as this to mean you're not physically able to get pregnant when, in fact, it was meant to say that you shouldn’t get pregnant (due to risk to your health or the health of the baby).
Similarly, you may have heard that you “can’t get pregnant” while taking a medication such as the blood thinner warfarin (Coumadin). Warfarin won’t prevent pregnancy, but you should work with your doctor to adjust your medications, as needed, to protect your safety and/or that of the fetus.
Additionally, if you or your partner have congenital heart defects—or family histories of CHD—there’s an increased risk that your child may be affected by heart disease. The specific risk varies depending on the form of congenital heart defect that you have. Discussing this risk with your care team and a genetic counselor is important.
If you have CHD and wish to become pregnant, carefully research your options with the guidance of a healthcare team with experience with pregnancy and CHD.
Your care team during pregnancy
If you were born with a congenital heart defect, you might already be used to being an advocate for your health. Whether you’re already experienced at managing your care or have only recently learned that you have a heart defect, you should try to find out as much as possible about your condition. If your heart health was handled until now by family, ask, if possible, about any treatments you had as a child and try to secure your medical records from any hospitals at which you were treated. Bring this information with you to appointments related to your pregnancy. Remember: Detailed knowledge of your heart condition will allow your healthcare providers to work with you to have the fewest restrictions possible.
You'll need to assemble your medical team to assess your pregnancy options and ensure your and the baby's safety. If you have significant CHD, you’ll likely have a high-risk obstetrician and/or perinatologist (an obstetrical specialist with expertise in managing higher-risk pregnancies) in your care team. They’ll work together with your cardiologist to guide you through questions surrounding pregnancy and be able to advise you as to any risks to your health and that of the baby.
Ideally, conversations about pregnancy will take place long before getting pregnant. If not, involve your obstetrician and cardiologist as soon as possible. If you’re already pregnant, your cardiologist and obstetrician can advise you about any surgical or interventional treatments necessary for your heart during or after pregnancy and medicines (medical therapy) that you may need to take or maybe even discontinue for safety reasons. More than likely, you’ll be referred to a perinatologist. A team-based approach with you, your perinatologist, obstetrician, and cardiologist will help determine how to keep you and your baby healthy during pregnancy and the best method for delivering your baby, whether naturally or by a Caesarian section.
Women's Cardiovascular Health
It's important for women to learn about their cardiovascular health, as women overall seem to have poorer outcomes from heart disease treatment than men.