Noli Taylor sensed something wasn’t quite right. Her chest felt tight, and she often rubbed near her shoulders to ease the discomfort.
Her friend noticed. “What’s going on there?”
When Noli mentioned having chest pain, her friend didn’t hesitate: “Heart issues in women sometimes show up in unusual ways. You should get it checked out.”
Noli, 47, is a bright, cheerful, and unwavering advocate for making healthy food accessible to all. As the co-Executive Director of Island Grown Initiative (IGI), a Vineyard-based nonprofit that supports a strong island food system and provides nutritious food for islanders in need, she’s passionate about both health and sustainability. IGI also manages the Island Food Pantry, serving the island’s most vulnerable populations. Noli is a founding member of the Island Climate Action Network, a group looking at Vineyard solutions to climate change. She lives in Aquinnah with her husband Isaac and their two teenagers, Emmett, 15, and Tillie, 12.
Heeding her friend’s advice, Noli made an appointment at her primary care office. From there, she was referred to the Cardiology Department at Martha’s Vineyard Hospital (MVH), where Kristie Hudson, CNP, put Noli through a series of exams including a stress test, EKG, and a heart monitor. When those tests didn’t yield definitive answers, a CT scan was ordered.
Despite her symptoms, Noli wasn’t concerned. “I thought it was going to be something minor,” she recalled. “I expected them to say, ‘it’s nothing to worry about’.”
But it wasn’t something minor, it was something rare.
The scan revealed a congenital heart anomaly. Noli was referred to Doreen DeFaria Yeh, D, MD, a cardiologist at Massachusetts General Hospital (MGH) and one of the nation’s leading experts on congenital heart defects. Dr. DeFaria Yeh continues the work of Dr. Richard Liberthson, a retired MGH cardiologist who was a pioneer in the field.
Noli’s diagnosis? An anomalous aortic origin of the coronary artery (AAOCA) occurs in 0.02-to-0.06% of the population, according to the American Heart Association. In some situations, a congenital narrowing of the artery could be fatal. “This is often a difficult diagnosis to make,” explained Dr. DeFaria Yeh. “EKGs, stress tests, and rhythm monitors often appear normal. For many, the first sign of the condition is sudden cardiac arrest.”
In other words, by the time an individual finds out they have it, it’s too late.
Noli’s life-saving diagnosis was made possible by a new CT scanner at MVH, funded by a generous donation from Ed and Kathy Ludwig in 2021. The Ludwigs had firsthand experience with Mass General Brigham’s life-saving care — Ed had been diagnosed with a subdural hematoma at the hospital in 2020, which led to emergency brain surgery at MGH. Grateful for his recovery and more time with his grandchildren, the Ludwigs donated the funds for the state-of-the-art scanner that would eventually diagnose Noli’s heart anomaly.
Noli met Ed during a visit to MVH and thanked him for his generosity. Ed smiled and said, “They say it’s better to give than to receive — that’s how I feel about this.”
Dr. DeFaria Yeh credited both the scanner and Noli’s nurse practitioner with uncovering the diagnosis that and saving her life. “Otherwise, healthy people like Noli can sometimes have their symptoms dismissed as anxiety or stress.”
The persistence of Noli and her caregivers paid off. “The fact that we have this incredible scanner at our small hospital, and access to some of the best medical care in the world, is amazing,” Noli said.
Dr. DeFaria Yeh had extensive conversations with Noli and her husband about the congenital anomaly and given the rarity the limited data available around long term outcomes as well as indications for surgical intervention. She referred Noli to Jordan Bloom, MD, MPH, a cardiac surgeon at MGH, “Dr. Bloom was incredible,” Noli said. “He explained the surgery to correct the anomaly and reassured me that while the surgery was low-risk, living with the condition wasn’t. The risk was sudden death.”
“The condition Noli was born with is rare, which means the people who perform this type of surgery are also rare,” Dr. Bloom says. “Knowing who to operate on, and when to do it, is a real challenge; so, while it’s rare at any volume to care for these patients, my group sees a lot of them.”
A multidisciplinary panel of adult congenital heart experts at MGB and Boston Children’s Hospital reviewed Noli’s records and recommended surgery. Having access to other experts to lean on is helpful in making the decision whether to proceed with surgery, Dr. Bloom said, noting his mentor’s mantra: “All of us are smarter than any one of us.”
Noli and Isaac had a frank conversation with Dr. Bloom where they asked what he called thoughtful questions about the condition and the implications of surgery. “We asked him, if this was your mother or your sister, would you recommend the surgery?” Noli said. Weighing the risks of her condition against the surgery, Dr. Bloom said the group as a whole absolutely recommend surgically repairing the artery given individual characteristics of her coronary artery and her symptoms of chest discomfort. She was reassured to have not only the opinion of two doctors, but the opinion of many experts weighing in on her unique condition.
The surgery was a great success, and Noli recovered at MGH under the care of a top-tier specialized medical team. “We saw notes and cards from past patients, thanking the doctors. People come from all over the world to see these specialists, and here we are, living on a small island with access to them. We are so fortunate.”
Dr. Bloom, who says it is in his nature to become close to his patients, recalls that wonderful post-surgery “fist-bump moment” with Noli and Isaac.
After five days in the hospital, Noli returned to the Vineyard, where she had to take it easy — no heavy lifting, no driving. The community rallied around her family. “We didn’t have to cook for two months! People brought meals, flowers, drawings from kids, and offered rides for our children. It made my recovery so much easier.”
Now back at work, Noli feels great, and her energy is returning to normal and she has no more chest symptoms. She’s grateful to be resuming her important work feeding the island’s families, and, of course, for the chance to watch her children grow up. Her message to other women: “If something feels strange, even if it’s not totally knocking you out, you should get it checked. It might just save your life.”
During a family vacation to the Vineyard in August, Dr. DeFaria Yeh, her husband, and their three children visited Noli at IGI’s farm. As they harvested potatoes, they found one that appeared to be a sign from nature. Smiling, they snapped a photo holding the heart-shaped spud. “In the photo, you can see her scar healing beautifully, and importantly a big smile of a woman with a healthy heart,” Dr. DeFaria Yeh said. “We’ve been through a lot together in this journey, and it was so rewarding to see her back to doing what she loves.”
