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Mom of 2 survives PPCM heart failure after giving birth, warns of rare disease targeting women

Posted at 7:20 AM, May 17, 2023
and last updated 2023-05-17 07:20:07-04

CLEVELAND — Just days after giving birth to her firstborn in June 2019, Anne Hutchison feared for her life as her heart began to fail. The disease, Peripartum cardiomyopathy or PPCCM was slowly killing Hutchison without her knowing.

Only 37 hours had passed since Hutchison gave birth to her firstborn, Lillian when she realized something was wrong. By the time she was discharged from the hospital, her heart was operating at 35% capacity.

“I was just having some issues with breathing, going up and down the steps. I felt short of breath when I tried to lay down. I felt like somebody had underwater had my head underwater,” she said.

Hutchison called her mother, who is a nurse and was instructed to go to the hospital. There, Hutchison became one of about 1,000 women reported with PPCM in the United States each year. The rare disease causes a pregnant woman’s heart to weaken and enlarge usually in the last month of pregnancy or within five months of giving birth. Hutchison had to get a peacemaker a few months later.

“They were running a bunch of tests and the next thing I knew there were like 10 doctors in the room. It was kind of a whirlwind,” she said. “You start to wonder how long of a life you’re going to have at that point and you just had a baby. I kept thinking am I going to be there for her fifth birthday or her 10th birthday?”

According to one of Hutchinson’s doctors, Dr. Karlee Hoffman, a cardiologist at the Cleveland Clinic, many women with PPCM, especially Black women, are often misdiagnosed or brushed off by a provider.

“If it's not recognized early and treated appropriately, it can absolutely have not only immediate complications like, you know, cardiac arrest, cardiac death, but it has long-term issues also,” she said. “The hard thing about this diagnosis is the symptoms of heart failure overlap with pregnancy. So, shortness of breath, lower extremity swelling, overwhelming fatigue. These are extremely common symptoms of heart failure and also pregnancy…The risk of getting these tests are low compared to potentially missing a diagnosis in treating appropriately.”

Knowing the risk and a warning from her doctors of the 20 to 30% chance of having another PPCM attack and her heart failing, Hutchison and her husband decided to have another baby. As Hutchison shared, “We felt they could get me through another pregnancy.”

“All I can do is provide the evidence that I have, provide the education, and be there to support a woman and what they want to do because it's their right to have a child and it's their right to have access to medical therapy and treatments. Fortunately for her, it was a success story,” said Hoffman.

Hutchison had a successful birth. On February 15, 2023, Charlotte was born and Hutchison survived.

“I remember like crying the first couple days at home just of happiness.”