Hope for Women with an Inherited Condition

December 19, 2013

Hope and her healthy baby boy.

ST. LOUIS - Having a baby is a dream for many couples. However, the dream isn’t always easily achieved. For some women, long-term medical conditions significantly increase the risk of problems in pregnancy, and can even preclude them from having children. But despite increased risk, most women with significant chronic medical conditions can have successful pregnancies and healthy children with appropriate care. 

Hope is one of those women. Diagnosed at age 15 with Marfan Syndrome, she’s no stranger to doctors and medical tests – having had routine heart screenings since her diagnosis. Marfan is an inherited connective tissue disorder affecting only one in 5,000 people worldwide. Like most women with Marfan, she knew pregnancy involved risks to her and to her baby.

“It’s always been stressed that if I became pregnant, there is a 50 percent chance of passing on the gene and also a risk of aortic dissection for me,” Hope said. “But I’ve always tried to lead a healthy lifestyle and did consult with my cardiologist prior to getting pregnant.”

It was Hope’s cardiologist who suggested she see a maternal-fetal medicine specialist, or high-risk obstetrician, during pregnancy.

“By taking sensible precautions before pregnancy and pursuing appropriate care during pregnancy, most women with Marfan Syndrome and many other chronic medical problems can have children,” said Dr. Gilbert Webb, a high-risk OB with Mercy Maternal and Fetal Health Center in St. Louis, Mo.,  Hope’s primary doctor during her pregnancy.

During pregnancy, Hope had a team-based approach to care. Her cardiologists worked closely with Dr. Webb to make sure all treatments were safe for both Hope and her baby. She had regular assessments of her heart, cardio-protective medications, activity restrictions and a specific approach to the birth of her baby. She also benefitted from monthly chiropractic and acupuncture appointments.

Last May, Hope delivered a healthy, baby boy with no injury to her own health.  

“Overall I was very lucky,” Hope said. “My entire pregnancy and birth went very smoothly. I know every situation and individual is unique. But I hope my story can offer hope to others with Marfan who might be considering pregnancy.”



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