A 'Second Chance at Life': New Mom Raises Awareness About Rare Form of Heart Failure During Pregnancy

Three years ago, Jen Rohe went from delivering a healthy baby girl to being diagnosed with heart failure and getting a heart transplant in the span of just 50 days. The experience was “incredibly shocking,” she recalls, as she had never had any issues with her heart before.

Now, Rohe is sharing her experience as part of the American Heart Association (AHA) Go Red for Women movement’s “Real Women” campaign to spread awareness that new moms like her need to be aware of the risk of heart disease.

“I think a huge issue is the lack of awareness in younger women,” says Rohe, who is 33. “We tend to think we’re invincible and don’t have to worry about these health issues until later. I hope that my story can spread awareness that it can happen to anyone, and everyone needs to keep track of their heart health.”

Back in 2017, the Olympia, Washington resident was pregnant with her second child. She had no problems when she gave birth to her son, Weston, two years earlier, and had little reason to believe her second pregnancy was anything but normal. While some things were different — she had a lot of swelling and gained much more weight this time around — doctors told her this was common for many women during pregnancy.

In one scary incident, when Rohe was six months pregnant, she blacked out in a parking lot, but an EKG showed no abnormalities at the time. “Unfortunately, that test doesn’t test for heart failure so my condition wouldn’t have been shown through that,” she says.

Rohe went on to deliver her daughter Sienna in November 2017. Soon after, she began experiencing shortness of breath, elevated heart rate, and fatigue, though she attributed this to normal postpartum symptoms.

A few days later, her health quickly declined. Extreme fatigue set in and she had trouble breathing while walking up a flight of stairs. She returned to the hospital where she was readmitted and diagnosed with a rare form of heart failure called peripartum cardiomyopathy.

When Rohe heard the news, she was speechless. “I didn’t think things like this could happen to me,” she says. “I was relatively young. I was active. I thought heart issues happened to people who were older or less active.”

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A Rare but Dangerous Diagnosis

Peripartum cardiomyopathy, also known as postpartum cardiomyopathy, is a type of heart failure that occurs during the last month of pregnancy or up to five months after giving birth. The condition weakens the heart’s ability to pump blood through the body.

“This causes a significant decrease in the percentage of the blood that's ejected from the left ventricle of the heart, the last chamber of the heart,” says Evelina Grayver, MD, cardiology specialist and volunteer medical expert for American Heart Association’s Go Red for Women movement. “When the heart contracts it can lead to less blood flow, and the heart is not able to meet the demands of the body's organs for oxygen." This could affect the lungs, liver, and other body systems.

Peripartum cardiomyopathy is rare in the United States, Canada, and Europe. The AHA estimates between 1,000 and 1,300 American women develop the condition each year.

Symptoms of heart failure can be difficult to diagnose during pregnancy, Dr. Grayver says, because they are similar to what a woman would normally experience in her third trimester.

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“Some of the symptoms can actually be things such as fatigue, feeling of the heart racing or skipping beats, otherwise known as palpitations,” she says. “Sometimes even increased nighttime urination, or what's called nocturia, could also be a symptom of it.”

Shortness of breath with activity, swelling of the ankle, swollen neck veins, low blood pressure, or dizziness or lightheadedness are all significant symptoms that could be related to peripartum cardiomyopathy.

“This is where a woman has to understand the fact that there's no such thing as ‘It's okay, it's pregnancy-related.’ Unless you really ruled out significant heart disease, you can’t say, ‘It's nothing,’” says Grayver, who is also a cardiologist at NorthWell Health in Manhasset, New York, and was not involved in Rohe’s care. “Significantly more extreme cases that feature severe shortness of breath and prolonged swelling, especially after delivery, really have to come to the attention of a physician as soon as possible.”

The underlying cause of peripartum cardiomyopathy is unclear, though researchers believe inflammation of the heart muscle due to a prior viral illness or abnormal immune response may play a role. Other potential factors include genetics, poor nutrition, and small-vessel disease.

Women who are obese, smoke, use alcohol, have a history of cardiac disorders, are of African descent, and have had multiple pregnancies are at a greater risk of peripartum cardiomyopathy.

Treatment for most women involves medications to help the heart recover. Some cases progress to severe heart failure and require further intervention.

Rohe was in the latter group. When she was readmitted to the hospital, an echocardiogram determined her ejection fraction (the measurement of how much blood the heart pumps out with each contraction) was only at 18 percent. A normal heart’s ejection fraction is between 50 and 70 percent, according to the AHA.

“The cardiologist came into the room and told me ‘You can never ever have another baby,’” she recalls. “The next thing he told me was that my best chance was going to be a heart transplant.”

Doctors put Rohe on life support, which supplied her lungs with much-needed oxygen. They then installed a temporary artificial heart to help pump blood from her heart to the rest of her body and listed her for a heart transplant.

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A New Heart Brings With It a 'New Normal'

While waiting for a new heart, Rohe faced even more heart troubles. She experienced internal bleeding around the artificial heart that required emergency surgery. Soon after, a clot that had formed around the device broke off and traveled to her brain, causing a stroke.

Then in January, 2018, Rohe had her heart transplant. She recovered for a few weeks in the hospital and was able to return home.

“The first year was definitely tough,” she says. “It was a transition and what I like to call a new normal. I take tons of medications now and have to be careful about what I eat. But I didn’t want this to keep me from the life I wanted to have even if it looks a little different now.”

Rohe’s family loves to travel so five months after her transplant, she and her husband Chris took their two toddlers to Disney World. Soon after, they went on a California road trip.

“My life is pretty similar to what it was before, but I’m also making sure I take steps to live a heart-healthy life,” she says. “That includes taking my medication on time, eating healthy, and being active.”

She also wants to encourage all women to know their numbers. “I check my blood pressure twice a day,” she says. “My [healthcare] team checks my cholesterol and blood sugar. I also check my weight daily to make sure I’m not gaining weight too quickly, which can be a sign of heart failure.”

“It’s really important to me to do everything I have to stay healthy,” Rohe continues. “I have this second chance at life with this heart and I want to keep it as long as I can.”