When you have a new baby, you can feel like your heart is bursting with love. But very rarely, during or after pregnancy, a mom can develop another type of heart change: a condition called peripartum cardiomyopathy, which is a weakness of the heart muscle.
With peripartum cardiomyopathy, the heart doesn’t pump as hard as it’s supposed to, which results in fluid buildup because the blood isn’t being circulated properly. This buildup can cause fluid in the lungs, which leads to shortness of breath, and can cause swelling in the legs.
Though peripartum cardiomyopathy is rare—only about one in 3,000 to 5,000 pregnant people in North America develop it—there are people who have a higher risk of developing the condition. “Common risk factors are having had prior pregnancies, if you have multiples, or if you’re older,” says Lili Barouch, a cardiologist who specializes in cardiomyopathy and an associate professor of medicine at Johns Hopkins University School of Medicine. “The biggest risk factor is if you’ve had it before, then you’re at significant risk for having it happen again.”
Though trouble breathing and leg swelling are the primary symptoms, some people also experience abnormal heart rhythms, fatigue and palpitations, says Barouch.
HELLP Syndrome: A rare, scary pregnancy illness you should know about But shortness of breath, swelling and fatigue often come with the territory during and after pregnancy, so how do you know if what you’re experiencing is worth worrying about? It’s all a matter of degree. If you’re very short of breath, have severe coughing when you lie down, have extreme swelling, or are very fatigued, then these are potential signs that you may have this condition, says Barouch. But even if your symptoms are mild, if you’re concerned, Barouch suggests talking to your healthcare provider, as it can be difficult to know what’s normal, especially if it’s your first pregnancy.
Peripartum cardiomyopathy typically occurs from one month before until five months after delivery, though Barouch says it most often begins after you’ve had your baby, with the vast majority of patients showing symptoms a couple of days or weeks after delivery.
If you have symptoms of it, it’s time to go to the hospital. “Any time that you’re having significant shortness of breath or chest pain you should be making your way to the emergency department,” emphasizes Anne Berndl, an obstetrician at Sunnybrook Health Sciences Centre who is a maternal fetal medicine specialist. If peripartum cardiomyopathy is suspected, your healthcare provider will use an echocardiogram to diagnose it, says Barouch.
Most people who develop the condition get sick very quickly (that shortness of breath thanks to fluid buildup is also known as congestive heart failure), but the good news is, many women can eventually recover all or almost all of their heart function. “About 40 to 60 percent of women will be improved or recover at some point in terms of no longer showing a dysfunction of the heart,” Berndl says. Treatment consists of diuretics given to help remove the excess fluid to help them breathe better, and other medications such as beta blockers that slow down the heartbeat to give the heart a rest so it has a better chance to recovery. If left untreated, patients could die from the condition.
Regaining full heart function can take anywhere from weeks to more than a year, says Barouch. But there are women who regain only partial heart function, and for them, medications may be part of their lives forever. Very rarely, even with medications, a small group of patients continue to get worse, and may need even more serious treatment, such as a heart transplant.
For those who are diagnosed while pregnant, Berndl says they would ideally carry their babies to term if they and their infants are stable. The priority is stabilizing the mother by treating any symptoms connected to her heart issues. When it comes to delivery, Berndl notes, a vaginal birth is best if mom and baby are stable, because C-sections come with a higher risk of infection and blood loss. However, in the event that an emergency C-section is needed, it would be performed.
For those who don’t fully recover from peripartum cardiomyopathy, there is a one-in-five chance of death if they become pregnant again, says Berndl. Barouch says this means that women who don’t recover full heart function will never be able to safely have another baby. For those who do recover, having another baby is still a big question mark, since all people who develop the condition are at risk of developing it again if they get pregnant.
But some people who have fully recovered may, in consultation with their cardiologist, be able to safely get pregnant and give birth, says Barouch. “I’ve successfully gotten several women through subsequent pregnancies like that, but it is still a risk,” she notes “I make sure they understand that they’ve taken some chances, just not as much of a chance as if they still had damaged heart function.” No matter what condition your heart is in, once a woman has been diagnosed with peripartum cardiomyopathy, she never advises another pregnancy within a year, as the heart will not be fully recovered. A cardiologist will be able to test that, and then may give the go-ahead to try to conceive.