WEDNESDAY, May 23, 2001 (HealthDayNews) -- For the first time, researchers have an overview of a problem that affects at least 1,000 mothers-to-be every year in the United States: a sudden, life-threatening heart weakness that can carry over to future pregnancies.
It took a survey of 15,000 physician members of the American College of Cardiology to gather detailed information on just 44 women who experienced the condition, called peripartum cardiomyopathy, reports Dr. Uri Elkayam, professor of medicine at the University of Southern California School of Medicine.
Small as that number might seem, "this is the first time the risk has been better defined so that women and physicians will be able to make decisions in a much more informed fashion," Elkayam says. His team's findings are reported in the May 24 New England Journal of Medicine.
In peripartum cardiomyopathy, a woman's heart begins to fail during pregnancy for no apparent reason, though Elkayam says some immunological mechanism is suspected. It occurs in one of about every 3,000 to 4,000 pregnancies, and the outlook is not good.
Symptoms include shortness of breath during even mild exertion, lung congestion, swelling of the legs and extreme fatigue. Once the condition is diagnosed, "approximately 20 percent will continue to deteriorate and will die or have a heart transplant," Elkayam says. "Approximately 60 percent will recover completely. The rest will recover partially or will continue to have cardiac dysfunction, developing chronic heart failure."
The survey focused on a question commonly put to doctors who specialize in the disorder: What is the risk in subsequent pregnancies? "The literature varies and there are all kinds of figures based on small numbers," Elkayam says.
Elkayam's team followed 60 subsequent pregnancies of the 44 women. They clearly could be divided into two groups, Elkayam says: 28 women whose heart function had returned to normal, and 16 women with persistent problems affecting the left ventricle, the blood-pumping chamber of the heart.
In the first group, six of the 28 women had symptoms of heart failure during pregnancy; none died. In the second group, seven of the 16 women had heart failure, and three died. A quarter of the pregnancies in the second group were terminated by abortions; of the pregnancies that went to term, more than a third ended with premature deliveries.
"We feel that with this information, women with peripartum cardiomyopathy who have a very strong desire to have more children can make their own choice," Elkayam says. "If they are not willing to take any chance, then pregnancy is not an option for them. But if they understand the risk, which now is much better defined, they can make their own decisions."
If the decision is to become pregnant, the pregnancy should be monitored closely, with echocardiograms every three months and continued monitoring after delivery, Elkayam says.
The study is "a commendable effort, a good start," but only a start, says Dr. John D. Rutherford, professor of medicine at the University of Texas Southwest Medical Center in Dallas and co-author of an accompanying editorial.
"We have a clearly defined condition. Now the trick is to accumulate more patients and get more knowledge," Rutherford says. He says the National Heart, Lung and Blood Institute has recommended establishing an international registry for the condition. "We need an impartial registry to see if we can find out more about what occurs and the impact on the mother," he says.
One immediate message is that in women who have the condition, "even if they recover and can function by normal standards, they can have subsequent deterioration in cardiac function, and it is somewhat unpredictable," Rutherford says. "If cardiac function deteriorates, in general, you want to terminate those pregnancies. In other cases, some will get through in one way, some in another."
At the moment, peripartum cardiomyopathy remains "a rare and poorly understood condition. There is not enough experience to tell the world how to behave," Rutherford says.
What To Do
Elkayam says doctors and women should be aware of symptoms suggesting the heart disorder because "the diagnosis may be delayed by what physicians consider the symptoms of a normal pregnancy."
Go to Thriveonline to learn the symptoms of this disorder. If you've experienced peripartum cardiomyopathy, check this support group. For information on heart problems during pregnancy, try the American Heart Association.
And read other HealthDay articles about complications during pregnancy.
To find out what clinical trials are being done on pregnancy and other reproductive conditions, check Veritas Medicine.
