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When Symptoms Can Be a Blessing

Noli Taylor, co-executive director of Island Grown Initiative.

Patient Story

When Symptoms Can Be a Blessing

Noli Taylor’s ongoing chest tightness was more than minor pains. When scans revealed a rare congenital heart anomaly, clinicians at Martha’s Vineyard Hospital collaborated with experts at Mass General to diagnose the condition and perform a successful surgery to repair it.

by
George Brennan
October 31, 2024

Noli Taylor sensed something wasn’t quite right. While the 47-year-old Martha’s Vineyard resident was going about her day, her chest felt tight. She often rubbed near her shoulders to ease the discomfort. When a friend noticed, and Noli mentioned her chest pain, her friend didn’t hesitate. “Heart issues in women sometimes show up in unusual ways,” she told her. “You should get it checked out.”

Noli, 47, is bright, cheerful and an unwavering advocate for making healthy food accessible to all. As the co-executive director of Island Grown Initiative (IGI), a Vineyard-based nonprofit with a mission to build a regenerative and equitable food system, she’s passionate about both health and sustainability. IGI also manages the Island Food Pantry, serving the island’s most vulnerable populations, and Noli is also a founding member of the Island Climate Action Network, a group looking at Vineyard solutions to climate change. She lives on the island, in Aquinnah, with her husband Isaac and their two teenagers, Emmett, 15, and Tillie, 13.

“The condition Noli was born with is rare, which means the people who perform the type of surgery Noli needed 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.”

Heeding her friend’s advice, Noli made an appointment at her primary care office, which led her to a battery of tests in the Cardiology Department at Martha’s Vineyard Hospital (MVH), a member of Mass General Brigham. There, Kristie Hudson, CNP, put Noli through a series of exams, including a stress test, EKG and heart monitoring. When those tests did not 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 recalls. “I expected them to say, ‘It’s just some strange thing.’”

It was something strange — something very rare. But it was not minor.

A Rare Heart Defect

Noli’s CT scan revealed a congenital heart anomaly, and doctors at MVH referred Noli to Doreen DeFaria Yeh, MD, a cardiologist at Massachusetts General Hospital and one of the nation’s leading experts on congenital heart defects. Dr. DeFaria Yeh officially diagnosed Noli with an anomalous aortic origin of the coronary artery, which occurs in 1% of the population, according to the American Heart Association. In some situations, a congenital narrowing of the artery can be fatal.

“This is often a difficult diagnosis to make,” explains Dr. DeFaria Yeh. “EKGs, stress tests and rhythm monitors often appear normal. For many people, the first sign of the condition is sudden cardiac arrest.”

In other words, by the time patients find out they have this type of defect, it is often too late.

Noli’s diagnosis was made possible by a state-of-the-art CT scanner at MVH, funded by a generous gift from MVH donors and grateful patients Ed and Kathy Ludwig in 2021. The Ludwigs had firsthand experience with Mass General Brigham’s coordinated, life-saving care — Ed had been diagnosed with a subdural hematoma at MVH in 2020, which led to emergency brain surgery at Mass General. In gratitude for his care, the Ludwigs made a gift to purchase the state-of-the-art scanner for MVH that would eventually diagnose Noli’s heart anomaly.

Dr. DeFaria Yeh credited both the scanner and Noli’s nurse practitioner and clinical team at MVH with uncovering the diagnosis that saved her life. “Otherwise healthy people like Noli can sometimes have their symptoms dismissed as anxiety or stress,” says Dr. DeFaria Yeh.

“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,” says Noli.

“We saw notes and cards from past patients thanking the doctors. People come from all over the world to see these specialists at Mass General, and here we are, living on a small island, with access to them. It’s amazing.”

Dr. DeFaria Yeh had extensive conversations with Noli and her husband Isaac about the congenital anomaly, the limited data available around long-term outcomes due to the rarity of the defect and options for surgical intervention. Based on those conversations, Dr. DeFaria Yeh referred Noli to Jordan Bloom, MD, MPH, a cardiac surgeon at Mass General.

“The condition Noli was born with is rare, which means the people who perform the type of surgery Noli needed 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.”

“Dr. Bloom was incredible,” Noli says. “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 of living with it was sudden death.”

“The real challenge is that heart surgery is a big deal,” Dr. Bloom explains. “You don’t want to do heart surgery on someone who doesn’t need it.” In this case, Noli was young, and otherwise healthy, but a successful surgery would put her mind at ease about a future cardiac event.

An Expert Collaboration

Dr. Bloom and a multidisciplinary panel of adult congenital heart experts at Mass General Brigham and other institutions reviewed Noli’s records together to determine whether they’d recommend surgery. Having access to other experts to lean on is helpful in making the decision whether to proceed with surgery, Dr. Bloom says, noting his mantra, “All of us are smarter than any one of us.”
After the experts convened, Noli and Isaac had a frank conversation with Dr. Bloom.

“We asked him, if this was your mother or your sister, would you recommend the surgery?” Noli says.

Given the individual characteristics of Noli’s coronary artery and her symptoms of chest discomfort, weighed against the risks of surgery, Dr. Bloom said the group wholeheartedly recommended surgically repairing the artery. Having the opinion of not just two doctors, but also the many experts across Mass General Brigham who understood her unique condition gave Noli the reassurance she needed to undergo the surgery. Noli’s surgery at Mass General was in May of 2024.

The surgery was a great success, and Dr. Bloom, who says it is in his nature to become close to his patients, recalls a wonderful post-surgery “fist-bump moment” with Noli and Isaac. Noli recovered at Mass General 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 at Mass General, and here we are, living on a small island, with access to them,” Noli says. “It’s amazing.”

Visiting Island Grown Initiative Farm

After five days in the hospital, Noli returned home to the Vineyard, where she had to take it easy — no heavy lifting, no driving. The community rallied around the Taylor family. “We didn’t have to cook for two months,” Noli says. “People brought meals, flowers, drawings from kids and offered rides for our children. It made my recovery so much easier.”

Now back at work at Island Grown Initiative, Noli’s energy is returning, and she has no more symptoms of chest pain. She is grateful to resume her important work at IGI, feeding the island’s families, seeking climate change solutions as a founding member of the Island Climate Action Network and, of course, having a second 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, get it checked.

Noli Taylor with Mass General cardiologist, Doreen Defaria Yeh, MD, with their heart-shaped potato at Island Grown Initiative’s Farm.

During a family vacation to the Vineyard in August, Dr. DeFaria Yeh, her husband and their three children visited Noli at Island Grown Initiative’s Farm. As the group harvested potatoes, they found one that appeared to be a remarkable sign from nature: a heart-shaped spud. The women snapped a photo that Dr. DeFaria Yeh often looks at fondly, remembering how the collaborative efforts of doctors from MVH to Mass General helped save Noli’s life.

“You can see her scar healing beautifully, and the big smile of a woman with a healthy heart,” Dr. DeFaria Yeh says. “We’ve been through a lot together in this journey, and it was so rewarding to see her back to doing what she loves.”

To support Mass General Brigham’s collaborative heart and vascular care, click here.