By Lisa Rapaport

(Reuters Health) – Few women with high-risk heart defects get all of the care recommended before conception to help increase their chances of having a successful pregnancy, a new study suggests.

Congenital heart defects such as defective vessels, leaky valves or holes in the heart muscle are among the most common types of birth defects. These structural problems can cause symptoms like abnormal heart rhythm and breathing difficulties and may require surgery or a heart transplant.

While most girls born today with congenital heart disease will reach childbearing age, pregnancy carries a risk of complications for these mothers and for their babies.

The risk is lower when women get tests and exams to assess their risk prior to conception. But less than 1% of women with these heart defects get all of the recommended pre-conception care to set themselves up for the lowest risk of pregnancy complications, the study found.

Nearly 23% of women with these heart defects received no pre-pregnancy care at all, the researchers report in the Journal of the American Heart Association.

“This is concerning because congenital heart disease is the most common type of heart problem in pregnancy and can greatly affect the mother and fetus, sometimes leading to miscarriage, birth defects, preterm delivery and low birthweight babies,” said Dr. Wayne Franklin, a congenital heart disease specialist at Phoenix Children’s Hospital and the University of Arizona.

“Women with heart defects can have heart valve, heart rhythm, low oxygen or pump problems that can make it difficult for her own body during pregnancy and it can be a serious challenge to carry a baby to term,” Franklin, who wasn’t involved in the study, said by email.

Women’s blood volume increases by 50 percent during pregnancy to help support her growing baby. When women have heart defects it may be difficult for their body to handle this additional pressure.

Hormonal changes during pregnancy can also increase the risk of irregular heart rhythm and blood clotting. In healthy women these changes aren’t usually a problem, but in women with structural heart damage this can increase their risk of stroke.

Pre-pregnancy counseling is essential for women with complex congenital heart defects so that they have a clear understanding of how their heart abnormalities could affect their own health and the health of their child during a pregnancy, according to guidelines from the American Heart Association issued in 2017.

In the study, researchers examined data on 2,524 pregnancies between 2007 and 2013 among 2,003 women with congenital heart defects. They included only women with private health insurance so that issues of access and affordability shouldn’t have been a barrier to getting preconception care.

“A substantial proportion of women with heart defects may not be aware that they have an increased risk of pregnancy complications,” said Sherry Farr, a researcher at the U.S. Centers for Disease Control and Prevention in Atlanta and lead author of the study.

“Additionally, between 25% and 50% of pregnancies among women with heart defects may be unintended,” Farr said by email.

Part of the problem may be that many women who see specialists during childhood to manage their heart issues don’t continue with this care in adulthood, said Mary Canobbio of the UCLA Transitional Cardiac Program for Adolescents and Young Adults.

“They only return to see a cardiologist when they find themselves pregnant and/or their obstetrician says they need to see a cardiologist,” Canobbio, who wasn’t involved in the study, said by email.

“All women with congenital heart defects should receive information and have discussion with her cardiologist and/or primary provider about pregnancy risk,” Canobbio said. “This study shows that is not happening across the board, and even if under the care of a cardiologist, women are not consistently receiving this information before becoming pregnant.”

SOURCE: https://bit.ly/2mixjn8 Journal of the American Heart Association, online September 12, 2019.

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