By Kankanit Wiriyasajja
BU News Service
Ali Weinberg Barton sat with her family at Brigham and Women’s Hospital while doctors explained her situation. She was trying to understand. She had just been diagnosed with a rare heart disease halfway through her pregnancy.
She had known something was wrong early on in the pregnancy. She could feel the fluid building up in her legs and near her knees.
Her doctors told to abort the pregnancy.
“The thought of going home to see everything I’ve bought for him made me feel devastated, and I couldn’t do it,” said Barton.
Her experience with heart disease while being pregnant and refusing her doctors’ advice led her to write the book “Against Doctor’s Orders,” which came out on February 21.
Back in 2010, Barton was diagnosed with pericarditis, an inflammation of the lining of the heart. She often felt out of breath and saw herself gain 10 pounds, seemingly overnight. When she recovered, she was told it was okay for her to do IVF. After years trying, over four cycles of in vitro fertilization and two miscarriages, she became pregnant with a boy.
In November 2012, 20 weeks into her pregnancy, things began to go wrong. Barton gained 20 pounds despite barely eating. A week later, she was admitted to the emergency room and was diagnosed with endomyocardial fibrosis, where heart tissue becomes scarred over and can no longer function properly. Doctors told her she needed a heart transplant and advised that she terminate her pregnancy. She refused.
Barton spent time researching alternatives to a heart transplant and ways to keep her baby. Her family was concerned for her safety and did not agree with her. Her doctors told her that her life was the main priority; they would terminate the baby to save her life, if needed.
10 weeks later, Ethan was born safe and sound, though premature.
“She’s in charge of her own care,” said Christine Scully-Dugan, a nurse at Brigham and Women’s Hospital who became friends with Barton. “If anybody would have a chance to survive, it would be her.”
Dugan said Barton educated herself on her conditions and spent time doing yoga everyday in her patient room. Dugan said she has seen one other case similar to Barton’s. However, that woman chose to have abortion.
Barton’s husband, Andrew, said he let Barton make the decision regarding the pregnancy.
“She’s a stubborn person, but if it wasn’t because of her strong will, we wouldn’t be having Ethan,” he said.
Five months later, Barton and Ethan travelled to Tampa, Fla., where she received a heart transplant. After 19 days of waiting, Barton got the call for a new heart. Since then, she has had to take immunosuppression drugs to keep her body from rejecting her new heart, and she will have to continue to take them for the rest of her life. She is currently taking about 40 pills a day.
Barton said her main goal with the book was to increase organ donation awareness.
“One person who donates their organs can save up to eight lives,” she said.
Barton is expecting a baby girl through surrogacy in May 2017.
“It doesn’t feel quite as real to me because I’m not carrying her in my body. But I’m excited and happy to add a little girl to my family.”
More information about Barton can be found on her blog: http://aliweinbergbarton.com/