How Will Congenital Heart Disease Affect My Pregnancy?

How Will Congenital Heart Disease Affect My Pregnancy?

December 30, 2015
6 comments
By: Nicole Brown, MD

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 need to speak with a high-risk obstetrician (maternal fetal medicine (MFM) specialist) and a cardiologist who has expertise in adult congenital heart disease (ACHD).

There, you’ll learn more 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.

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, the kinds of medications she takes, if she had cardiac symptoms and events prior to pregnancy, and how well her valves and heart muscle 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 cause of maternal complications during pregnancy and it is important that every woman knows her individual risks, both for herself and her unborn child.

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 (ACHD) to conceive, but their pregnancy might not be without complications and risk.

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.

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.

Here’s what typically happens during a visit:

  1. 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.
  2. 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 in Cincinnati.
  3. 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, procedures, or surgeries prior to attempting pregnancy so that you might reduce your risks during pregnancy.
  4. A genetics discussion. We can also help you determine your risks for passing on the 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. A fetal echocardiogram is typically recommended between 18-24 weeks gestation to check for heart defects in your unborn child.

The main take away 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.

If you have questions, or would like to request an appointment, please contact our Adolescent & Adult Congenital Heart Disease Program.

While the majority of women can have a healthy pregnancy, the spectrum of ACHD complexities is vast, and a course of action needs to be individualized for each patient.

You may find the following video helpful, which answers some of the most common questions related to ACHD and pregnancy that we receive in clinic.

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Nicole Brown, MD

About the Author: Nicole Brown, MD

Nicole Brown, MD is a cardiologist in the Adult Congenital Heart Disease Program at Cincinnati Children's. She trained in both Internal Medicine and General Pediatrics in Cincinnati prior to completing her Pediatric Cardiology Fellowship in Pittsburgh. Dr. Brown returned to Cincinnati for an additional fellowship in ACHD and remained on staff as faculty. She is board certified in ACHD, Pediatric Cardiology, Internal Medicine, and Pediatrics. She is passionate about caring for adults with congenital heart disease and helping women with CHD live healthy and fulfilling lives.

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Comments

  1. novy joy January 04, 23:03
    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.
    • Nicole Brown, MD
      Nicole Brown, MD Author January 05, 14:22
      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.
  2. Crystal January 11, 21:13
    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!
    • Nicole Brown, MD
      Nicole Brown, MD Author January 19, 15:17
      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!
  3. Jan January 16, 11:35
    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?
    • Nicole Brown, MD
      Nicole Brown, MD Author January 22, 13:47
      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.
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