By: Marlon Rosenbaum, MD

Director of Adult Congenital Heart Disease

Columbia University, New York, NY

Perspectives from a Physician and a Parent

Increasing numbers of women with congenital heart disease (CHD) are having children. While pregnancy may not be the choice that every woman will make; this article speaks to pregnancy and CHD. For many women, the risks of pregnancy are low. However, in some situations there are more risk factors associated with pregnancy.

It is critical that all women with CHD are evaluated by an Adult Congenital Heart Disease specialist to determine the appropriate care and treatment plan. In some cases a pre-pregnancy procedure may be recommended. These include patients with a Fontan repair, mechanical valve, severe valve obstruction, or weak heart muscle. There are also conditions such as severe pulmonary hypertension or aortic aneurysm with Marfan's syndrome where pregnancy is extremely high risk. Doctors may advise against pregnancy in these cases and encourage prospective parents to seek other parenting options.

During pregnancy a woman's cardiac output increases to support the growing fetus. For women with reduced heart muscle function, there are risks for maternal heart failure, miscarriage, premature birth, and fetal growth delay. Answers to common questions about pregnancy in women with congenital heart disease are available through the Adult Congenital Heart Association.

Fortunately, when women work with their adult congenital heart care team prior to conception, tests can be performed. Tests such as echocardiogram, MRI or CT, exercise testing, and cardiac catheterization can distinguish low risk patients from those who require a pre-pregnancy intervention. Procedures such as catheter or surgical valve replacement, correction of aortic narrowing, or closure of a hole in the heart are sometimes performed to improve pregnancy outcomes. This evaluation should occur before conception since some of these tests and procedures may be harmful to the developing fetus.

Pre-pregnancy assessment is also an opportunity to evaluate safety of medications and risk of congenital heart disease for the fetus. Finally, consultation with an adult congenital heart disease specialist may alleviate fears and misconceptions about pregnancy in the low-risk ACHD patient. Learn more about planning a healthy pregnancy if you have a CHD.

Allison's Two Very Different Pregnancy Experiences

My name is Allison and I am a proud mom of two heart-healthy children. I was born with Pulmonary Atresia with Intact Ventricular Septum. I had 2 open-heart surgeries before I was 6 months old, and a 3rd surgery at 10 years old to put in a bio-prosthetic Pulmonary Valve. Other than the 3 surgeries, and one bout of bacterial endocarditis at 12, I still had a relatively healthy childhood. I also have a younger brother who was born with the same congenital heart defect (CHD). There is not a known genetic cause for Pulmonary Atresia.

I was 18 when I got pregnant with my first child and 19 when I had my daughter. I was high risk due to my congenital heart defect. During that pregnancy, I had increased valve regurgitation levels, in both my pulmonary and my tricuspid valves - which was expected due to the higher blood volume during pregnancy. I was closely monitored for any complications at each appointment. I had a fetal echo to rule out any heart defects with my daughter. The good news was that the test did not find anything to be out of the normal range.

My obstetrician and my cardiologist both recommended a regular vaginal delivery. For me, a caesarian section would have been a higher infection risk. However, due to the strain that labor puts on a woman's body, they recommended an epidural to keep my pain and stress levels on my heart down during labor. Eight days before her due date, after 10 hours of labor she was born without complications! The regurgitation in my heart valves returned to normal (for me) within a few months. She is now a perfectly healthy 2-year-old.

My second pregnancy with my son, I was (again) high risk due to my heart defect. It seemed to be a fairly standard pregnancy, although I was notably more tired than with my first pregnancy. I also experienced a good bit more morning sickness. 

The increased valve regurgitation was back as expected, but everything was going normally up until about 27 weeks. I had some instances where I was leaking amniotic fluid, but it always stopped. I had some minor bleeding start, but it stopped within about 30 minutes. My care team believed that my uterus was sitting lower in my pelvis and that the bleeding was due to a ruptured uterine blood vessel.

Everything changed at 31 weeks; I was admitted to the hospital for leaking amniotic fluid with merconium. The doctors started me on medication to attempt to stop contractions and hoped to keep him in at least until 34 weeks. I was also placed on antibiotics and steroid shots. They told me I would need to stay in the hospital on bed rest until he was born. We were both on heart monitors and nurses regularly checked in on us.

Early the next morning, things started escalating and by 7 am I was given more meds intended slow down my labor; with no luck. At about 7:15, the decision was made to rush me to labor and delivery. My son entered the world at 31 weeks and a little over 3 lbs. We were extremely blessed through his NICU stay, he remained happy and healthy and slowly gained weight. He came home approximately 7 weeks later.

The doctors did not find a specific medical reason, on either my part or my baby's, for the early delivery. Not every patient will have the same experiences I have had. My cardiologist did say that it was probably better I had my children when I did, as I was younger, healthier, and relatively stable at the time. 

I had a tubal ligation the afternoon of my son's birth, even though I am only 21. This was a simple and easy procedure, with minimal risk. For several reasons, my partner and I had made this decision earlier in my pregnancy. Luckily, I already had the paperwork signed and in place when my son was born early. We are happy with our little family, one girl and one boy, and it seemed to be a safer, more effective choice for me.

Allison (age 21)

Additional resources

The CHD According to Me series is an output of the Congenital Health Public Health Consortium (CHPHC); it was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS). The contents of the fact sheet are solely the responsibility of the CHPHC and do not necessarily represent the official views of, nor an endorsement by the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.  


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