The short answer is: it depends. If you have congenital heart disease and are thinking about becoming pregnant, or if you already are pregnant, you should speak with a high-risk obstetrician (maternal fetal medicine (MFM) specialist) and a cardiologist who has expertise in adult congenital heart disease (ACHD).
These doctors will talk with you about your particular heart defect and how your heart will tolerate pregnancy. This is important information to learn because pregnancy places extra demands on the heart—even if you don’t have congenital heart disease. During pregnancy, normal physiologic changes occur that affect your blood volume, cardiac output, heart rate, and blood pressure. These changes may have a bigger impact if you have underlying heart disease.
WHAT ARE MY RISKS?
How pregnancy will affect a woman born with a congenital heart defect depends upon her type of defect, the types of repairs she has (or hasn’t had), how well she feels prior to pregnancy, if she has experienced any heart-related complications, the kinds of medications she takes, and how well her valves, heart muscle, and electrical system are currently working.
Some potential issues during pregnancy can include heart rhythm problems, heart failure, blood clots, strokes, high blood pressure, and aortic aneurysms (dilation) and dissection (tear in the wall of the aorta). Cardiovascular disease is a significant cause of maternal complications during pregnancy in the United States, and it is important that every woman knows her individual risks, both for herself and her unborn child.
IS IT SAFE TO GET PREGNANT?
If you were born with a congenital heart defect, you may have received mixed messages about pregnancy. Some women were told they “can’t get pregnant” by their doctors, when they likely meant, “you shouldn’t get pregnant.” In other words, it is possible for most women with adult congenital heart disease to conceive, but pregnancy may be higher risk and warrant more frequent testing and visits with specialists, as well as an individualized delivery plan. There are more rare cases in those with very serious heart conditions in which we may recommend against pregnancy to avoid unacceptable risk to mother and baby.
The reality is that most women with ACHD (with a few exceptions) can have a healthy pregnancy, so long as heart health is optimized before pregnancy, and they are appropriately monitored during pregnancy, delivery, and the postpartum period.
SCHEDULING AN ACHD CONSULTATION
You can start the process of learning more about your heart defect and how it might impact pregnancy by scheduling a consultative visit with an ACHD specialist. The best time for this is when you are considering or planning a pregnancy—but if you are already pregnant, you should see a specialist in the first trimester.
WHAT TYPICALLY HAPPENS DURING A VISIT?
- A complete evaluation of your heart. This will help determine how well you might handle the pregnancy. This evaluation usually includes personal and family history, physical exam, EKG, and echocardiography, as well as a review of your cardiac medication list. Additional tests, such as a stress test, Holter monitor, or cardiac MRI may be recommended as well.
- A detailed discussion about what you can expect. We will describe the potential complications we think you may encounter. We will determine if you are at low, medium, or high risk, or if your risks are essentially the same as the general population. The evaluation will help shape the plan for monitoring your heart health during pregnancy and beyond. If you do not already have a high-risk OB or MFM specialist, we will refer you to one, as we collaborate closely with our MFM colleagues throughout the region.
- Pre-pregnancy recommendations. If we are able to evaluate you prior to pregnancy, we can advise you if we think you should have any medications added or changed, procedures, or surgeries prior to attempting pregnancy so that you might reduce your risks during pregnancy.
- A genetics discussion. We can also help you determine your risks for passing on a heart defect to your child. It depends upon the condition, but in general the risk is about 1.5-3% if the father has ACHD and up to 18% if the mother has congenital heart disease. The presence of a known genetic syndrome or condition may further increase the risk of cardiac disease in your child, and so we may recommend a genetics consultation and testing to look for those conditions. A fetal echocardiogram is typically recommended between 18-24 weeks gestation to check for heart defects in your unborn child.
The main takeaway here is that if you were born with congenital heart disease and you’re thinking about becoming pregnant, please make sure that you are followed by a cardiologist specializing in ACHD.
While the majority of women can have a healthy pregnancy, there is a broad spectrum of complexity and risk within patients born with heart defects. We will work with you to assess your personal risk and to form an action plan to carry you through your pregnancy and beyond.
Read Next: With proper care, many women with congenital heart disease are able to have a healthy pregnancy. Read about one mother’s pregnancy journey with ACHD.
Why is it that my OB did not see or found any deffects during my pregnancy?
Just deliver my baby girl last year nov.30 2015 and died at dec. 20 2015, the diagnose was conginetal heart disease,tetralogy of fallot with pulmonary valve artrecia and neonatal sepsis.we both side of my husband don’t have any history of that disease.
Hi Novy,
I am so sorry to hear about the loss of your daughter. Though heart defects can often be confirmed with a fetal echocardiogram if there is suspicion based on an OB ultrasound around 20 weeks, they are not always easily detected. It is not routine to have a fetal echo performed if there is no family history of such and no suspicion on the routine ultrasound. Also, as heart defects occur in about 8 out of every 1000 live births, most of them occur spontaneously (i.e. in those with no known family history or risk factors). Occasionally, there is an association with a genetic or chromosomal problem. If you are considering pregnancy again in the future, I would recommend meeting with a maternal fetal medicine (MFM) specialist and a genetic counselor ahead of time to determine the likelihood of a recurrence and if any genetic testing is warranted. Also, you should have a fetal echocardiogram around 20 weeks gestation with any future pregnancy (even if the OB ultrasound is normal) since you now have an indication for fetal echo due to your prior pregnancy being complicated by congenital heart disease. I hope this information is helpful in pointing you in the right direction. Best wishes to you and your family in the future.
I have a chd. Vsd and pulmonary htn, unrepaired. With trunchus arteriosis. I was told to never get pregnant. I however found a dr who said that if it was what I wanted he would help me. I had a c section at 28 wks and now have a healthy 4 year old. Im thankful to be alive and very thankful for amazing physicians who truly want the best for their patients. I love to tell my story bc I know I am one of the few to live through a pregnancy with my condition!
Dear Crystal,
I am so happy to hear that you had a successful pregnancy and delivery, and most of all that your child is healthy. Please continue to take good care of yourself, as you are now a busy mom!
Wishing you health and happiness!
My sister she had a fetal echo today and found out that the baby has CHD-Tetrology of Fallot, they have been devastated. They have been booked with the Pediatric Cardiologist but the Gynac gave the option to either abort the baby or to have the baby and then have a surgery done as soon as the baby is born. she is 18 weeks right now. What option she should opt for? What will be the lifelong suffering the baby would have if they go ahead and have the baby? She is 37years old now and had this baby on the 6th cycle of IUI will she have problems to conceive again after this pregnancy and chances of the next baby having any CHD?
Hi Jan,
I am sorry to hear your sister had to go through so much stress to get pregnant and now is learning how to cope with and process this diagnosis of congenital heart disease in her unborn child. Still, I wish her congratulations on her pregnancy. Tetralogy of Fallot (ToF) is a rather common form of congenital heart disease. I recommend that she meet with a fetal cardiologist to help inform her decision.
Because Tetralogy of Fallot occurs on a spectrum, it is extremely important to evaluate where on the spectrum the baby’s anatomy falls. If it is straightforward TOF, then the prognosis is good (Olympian Shaun White has TOF, though he, of course, is an extraordinary case). If it is on the more severe end, such as TOF with pulmonary atresia and MAPCA’s, then the counseling is very different. The extracardiac evaluation is also extremely important, as TOF can be part of a genetic syndrome, and thus, she should undergo a detailed extracardiac ultrasound by a skilled MFM as well and consider amniocentesis.
There are some babies with more severe forms or who have ToF as part of a genetic syndrome or in conjunction with other non-cardiac congenital anomalies, and those babies are in a more complex situation. I would urge her not to make any decisions until she meets with a fetal cardiologist. It is true that all babies with ToF will need at least 1 surgery. Many people with ToF need another surgery or procedure in the cardiac catheterization lab (sometimes just 1 but sometimes several) later in life. This depends on the individual. If your sister’s child only has ToF, then he/she is likely to enjoy a high quality of life. Many with ToF go on to have their own children and live productive and fulfilled lives. Again, she should meet with the Pediatric Cardiologist to learn more about the diagnosis in the specific case of her child. Her child with ToF will always need lifelong cardiac care by a doctor specializing in congenital heart disease. If your sister has a another pregnancy later, then she would have a slightly increased chance of having another child with congenital heart disease. That means she should have a screening fetal echocardiogram with any future pregnancies as well. I hope this helps, and I wish her and your family all the best.