Intermountain Press Release

Salt Lake City—LDS Hospital's Heart Failure Prevention and Treatment Program has launched the state's first registry to collect scientific data on a type of a potentially-fatal heart failure in pregnant women.

Pregnancy-related cardiomyopathy, called peripartum cardiomyopathy, may appear in the final month of pregnancy and can last up to five months after a women delivers her baby. Peripartum cardiomyopathy is a medical mystery that clinicians at LDS Hospital are hoping to shed some light on with the development of the new registry.

Doctors and researchers don't understand the cause of the disease, and there's conflicting data on whether it's safe for a woman who has developed it to have another baby. LDS Hospital researchers would like to learn how to prevent cardiomyopathy and to identify those women at risk early. So they're trying to find women who may hold the key to understanding the condition - those who have experienced it, to enroll in the registry.

Through the registry, LDS Hospital clinicians, working with the Utah Affiliated Hospitals Heart Failure Clinical Research Network, will collect blood samples for analysis, looking for genetic tendencies and links. The researchers hope to find common identifying factors between patients with the disease and therapies that help with both treatment and prognosis.

Peripartum cardiomyopathy is a condition that is commonly referred to as heart failure during or after a recent pregnancy. Heart failure is a common medical condition, and the risk of developing it increases with age. The symptoms of peripartum cardiomyopathy are the same symptoms of heart failure: shortness of breath, fatigue and evidence on an echocardiogram that the heart muscle is failing.

Symptoms include shortness of breath, fluid retention, cough, leg swelling. Sometimes these symptoms may occur to a minor extent during pregnancy, so the actual diagnosis of heart failure is often missed.

If heart failure is suspected, then a full diagnostic work up is done, including an echocardiogram, chest x-rays, labs, etc. Then usual medicines of heart failure should be started; diuretics for congestion, ACE Inhibitors for left ventricular ejection fraction (weak muscle) of less than 40 percent (50-70 percent is normal), then beta blockers.

"Since the symptoms of peripartum cardiomyopathy may be missed, and, because this is not a common diagnosis during or just after pregnancy, it may be missed, unless symptoms are severe," says Kismet Rasmusson of the LDS Hospital Heart Failure Prevention and Treatment Program. "Over the last few years, we have learned more about women with this condition, yet we still have many unanswered questions, like, how do we best treat these patients? How long do they need usual medicines that are standard for other heart failure patients? Is it safe for these women to have future pregnancies? Are there genetic tendencies with this condition? We hope to be able to understand the genotype, so we might be able to answer these and other questions."

The LDS Hospital researchers also hope to better understand the differences that lead to different outcomes, such as why some women recover completely from the pregnancy-related heart problem, while others do not, says Rasmusson. The researchers are also forming a support group for women who have the disease, which has been nicknamed PPCM.

Women interested in participate in the registry can call LDS Hospital at (801) 408-1394 or e-mail either kim.allan@intermountainmail.org or ashli.zeigler@intermountainmail.org.