Treatment advances in recent decades have markedly changed what it means to be born with a heart defect. Approximately 85–90 percent of children who are born with congenital heart defects in the United States now survive to adulthood.
If you are a member of these newer generations of adults with congenital heart disease, you may have arrived at adulthood with questions about the safety of pregnancy and delivering a baby.
For many women who were born with heart defects, pregnancy is as safe as for women born with a normal heart. For some women with severe congenital heart disease, pregnancy may carry high risks, both for the mother and for the baby. For these women, it is sometimes 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, as a woman with congenital heart disease, you “can’t get pregnant.” This statement requires clarification from your care team. Some women may interpret statements such as this to mean they are not physically able to get pregnant, when, in fact, it was meant to say that they should not get pregnant (either due to risk to their health or the health of the baby).
Similarly, you may have heard that you “can’t get pregnant” while taking a medication such as Coumadin (warfarin). Coumadin will not prevent pregnancy, but rather you should not take it during pregnancy because it can have serious effects on the developing fetus, such as birth defects or miscarriage. Prior to becoming pregnant, it is important to determine if there are any medication changes that need to be made in order to protect your safety and/or that of the fetus.
Additionally, if you or your partner have congenital heart defects – or family histories of congenital heart disease – there is 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. It is important to discuss this risk with your care team and a genetic counselor.
If you are a woman with congenital heart disease who wishes to become pregnant, carefully research your options with the guidance of a healthcare team that has experience with women with congenital heart disease.
Your Care Team During Pregnancy
If you were born with a heart defect, you may already be used to being an advocate for your own health. Whether you are 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.
Critical to assessing your pregnancy options and ensuring your safety, along with the safety of the baby, will be assembling your medical team. If you have significant congenital heart disease, you will likely have a high-risk obstetrician and/or perinatologist (an obstetrical specialist who has expertise in managing higher-risk pregnancies) who will be part of your care team. They will work together with your cardiologist to guide you through questions surrounding pregnancy. They will 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 are already pregnant, your cardiologist and obstetrician can advise you about any surgical or interventional treatments that may be necessary for your heart during or after pregnancy, as well as medicines (medical therapy) that you may need to take or maybe even discontinue for safety reasons. More than likely, you will be referred to a perinatologist. A team-based approach with you, your perinatologist, your obstetrician and your cardiologist will help determine how to keep you and your baby healthy during pregnancy, as well as the best method for delivering your baby, whether it is naturally or by Caesarian section.
Pregnancy Risks in Women with Congenital Heart Disease
While many women with congenital heart disease can successfully deliver a baby, careful evaluation of the risks is critical. Heart disease is the number one contributor to maternal deaths worldwide, and women with congenital heart disease in some cases will be less able to tolerate the cardiovascular changes that accompany pregnancy and delivery.
Currently, the following are examples of congenital heart defects that are seen as not greatly increasing the risk to the mother (individual cases vary):
Examples of high-risk forms of congenital heart disease for pregnancy include the following:
- Pulmonary hypertension
- Eisenmenger syndrome
- Severe aortic stenosis or other valve disorders
- Single ventricle heart disease (in which the heart only has one chamber capable of pumping blood away from the heart, rather than two) or other forms of cyanotic heart disease
Your cardiologist can advise you as to whether your congenital heart defect carries a high, moderate, or low risk—and what are the best ways to protect the health of you and your baby.
Questions to Ask Your Doctor About Pregnancy and Congenital Heart Disease
The following questions can help you talk to your physician. Print out or write down these questions and take them with you to your appointment. Taking notes can help you remember your physician’s response when you get home
- As a woman with congenital heart disease, is pregnancy safe for me?
- As a man or woman with congenital heart disease, are my children more likely to also have congenital heart disease?
- If pregnancy is not advised for me, what are my contraception options?
- Are some forms of contraception safer for me than others?