Family Planning with Pulmonary Hypertension

If you’re a woman living with pulmonary hypertension and you’re thinking about starting a family, it’s important to have a conversation with your pulmonary hypertension specialist and your primary care physician. PH experts recommend that PH patients avoid becoming pregnant due to the dangerous risks it poses to both mother and child. The information below is adapted from a consensus statement issued by the Pulmonary Hypertension Association’s Scientific Leadership Council as well as recommendations provided by a panel of PH-treating medical professionals at PHA’s 2008 International PH Conference. This information is no substitute for a personal discussion with your PH specialist and your primary care physician about the specifics of your situation, but meant to answer some basic questions about this difficult issue.

Why did my doctor advise me to avoid pregnancy?

Carrying a child can be dangerous for PH patients due to the increased strain it places on the heart and lungs. In a normal pregnancy, your blood volume increases by about 50%. The sudden change in blood volume during and after delivery can lead to right-heart failure in PH patients whose right-heart is already overworked due to the increased pressure in their pulmonary arteries. Estimates place the risk of pregnancy-related heart failure in PH patients at 30-50%. Some of the medications prescribed to PH patients are also known to be harmful to the developing fetus.

What type of birth control should I consider?

PH specialists recommend that sexually active women with PH use at least two and preferably three forms of birth control. Doctors do not encourage hormonal contraceptives, including the birth control pill and the birth control patch, because they can increase your risk of blood clots. Certain PH medications may also decrease their effectiveness. Instead, PH patients should talk to their doctors about barrier methods (condoms and diaphragms with spermicide), estrogen-free products, and surgical options (tubal ligation for women, or a vasectomy for your male partner if you’re in a monogamous relationship).

I want to have children. What are my options?

While starting a family can be challenging for women with PH, it is not impossible. Once you reach the place where you can accept that you won’t be able to carry a child of your own, you can begin to research your best available options. You might consider foster parenting or adoption. While adoption agencies screen carefully for health and financial stability, adoption is not out of the question for patients who are in stable health and have a strong family support network. If you and your PH specialist and your primary care physician feel you’re healthy enough to consider it, you can ask your PH specialist to write your adoption agency a letter of support to help the process along. Read more

The use of surrogate mothers (women who have fertilized eggs inserted into their uterus to carry a fetus) is an option that some PH specialists have considered for selected patients, although this has been done in only a few instances. There are ethical, practical and medical issues associated with the use of surrogate mothers for PH patients that should be discussed not only with your PH specialist and your primary care physician but also with an experienced reproductive counselor.

What do I do if I become pregnant?

If you do become pregnant, make an appointment with your PH specialist as soon as possible.

Where can I find more information?

Listen to the full panel discussion from PHA's International PH Conference in 2008 to learn more about issues relevant to young women with PH, including pregnancy and birth control.

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.