Ali Barton with her newborn son, Ethan.

When Ali Barton, 31, was about 18 weeks pregnant, she began experiencing “bizarre” swelling in her legs, sudden weight fluctuation, and intense nausea after just a few bites of food. Her local care team at the time attributed these symptoms to her pregnancy, but a few weeks later, Ali went to her community emergency department, worried that she may have a virus.

Following an echocardiogram, she was immediately transferred to Brigham and Women’s Hospital (BWH), where a team of high-risk obstetricians and heart failure specialists were intensely focused on her care. Ali previously had been diagnosed with endomyocardial fibrosis, a rare disease that causes a thickening of the walls of the heart, resulting in difficulty pumping and fluid retention.

Ali’s physicians at BWH had never seen a case of endomyocardial fibrosis in a pregnant woman, and with no experience to go on, they were deeply concerned for the health of both Ali and her unborn baby.

“They told me I could die, but I was already so attached to the baby,” she said, adding that she had undergone four cycles of in vitro fertilization (IVF) to conceive. “I had to give him a chance.”

Her care team committed to doing everything possible to support Ali and admitted her into the Shapiro Cardiovascular Center for round-the-clock monitoring and care throughout the remainder of her pregnancy.

“We prepared for every eventuality early in Ali’s stay and how we would respond if she developed progressive heart failure,” said Dr. Neal Lakdawala of the Center for Advanced Heart Disease, who collaborated closely with Dr. Katherine Economy of Maternal-Fetal Medicine (high-risk obstetrics). “Because this is such a rare disease and there isn’t a lot of information about it, we needed to do everything possible to prepare.”

Although physicians originally thought labor would have to be induced at 24 weeks, Ali’s health improved dramatically once she began receiving medications to reduce excess fluid.

“I felt better after the first few days of being here than I had in years,” she said, noting that she lost about 25 pounds of water weight immediately, which reduced her painful swelling. “The doctors here are phenomenal. I’ve received the best care from my OB and cardiology teams.”

Barton was in good health and spirits at 24 weeks pregnant, and doctors decided not to induce her unless her heart began to fail. On February 1, at 31 weeks pregnant, Ali gave birth to Ethan Matthew. Four weeks since delivery, both mom and baby are in good health.

“I was able to push and have as close to a natural labor experience as possible,” said Ali. “My heart did great.”

The baby’s name has special significance. “Ethan means ‘strong,’ and Matthew means ‘gift from God,’ which he really is,” said Ali. “My husband, Andrew, and I fought so hard to have him, and we feel so blessed that he’s here.”

Ali was discharged three months after her admission. “The quality of care at this hospital is what got me through a very hard time,” she said. “The nurses in Shapiro were unbelievable, and now, I’m learning so much from the neonatal intensive care unit (NICU) nurses. You can just tell they care so much.”

Ethan stayed in the hospital a bit longer to build up his strength and weight and then headed home with his parents a few weeks ago.

– Liz M.

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