Andrea Taylor was trying her best to stay calm in the waiting room of the Arkansas Children’s Hospital. Down the hall, her 2-year-old son Aiden was having a heart catheterization. Up until a couple months ago the worst health problem Aiden had ever dealt with was a cold. Then one day, he got sick. He was hospitalized for what doctors initially thought was pneumonia, but his symptoms confused them. After ordering a chest scan, results showed Aiden’s heart to be enlarged. Suddenly they were in a race against the clock to find answers.
The sight of Dr. Fontenot walking towards her is an image that will stay with Andrea forever. His head was down, his brow furrowed, and when he reached her it looked like he was searching for the right words. Carefully, he explained that he had let every other cardiologist and specialist in the hospital look at Aiden’s images from the catheterization, and no one had ever seen anything like it. Andrea thought she had prepared herself for every possible outcome, but this uncertainty was far worse than she could have anticipated. That night the geneticist sat with Andrea and her husband until the wee hours of the night, researching what plagued their young son.
By morning, they had an answer.
After ruling out every other possibility, doctors drew the conclusion that Aiden almost certainly had ATS. Arterial Tortuosity Syndrome is an incredibly rare genetic disorder that affects connective tissue. It results in the lengthening and twisting of arteries throughout the body. If left undiagnosed, deadly complications or infections can arise from the underlying side effects of ATS, resulting in a 40% mortality rate for patients under the age of 5. As of now, there are about 10 known cases in the United States. Doctors believed Aiden was one of them.
In Aiden’s case, Dr. Fontenot knew open-heart surgery was crucial. Desperately, Andrea tried to find another way. She reached out to specialists all over the world who had seen ATS before, but the pool was much smaller than she’d hoped. The only other doctor in the US to have seen patients with ATS was at Johns Hopkins, and he concurred: the best chance Aiden had at survival- and a diagnosis- was open-heart surgery. So, on the day of the operation, she brought her son into a room without knowing whether or not he would make it out. But as she put it, “I knew as a mother if my baby was going to have any chance at all, I had to risk losing him in order to give him a future.”
Luckily, Aiden made it through surgery with flying colors. He had more energy than ever before. In fact, there weren’t any complications for years, until one winter Aiden fell ill again. What transpired was 3 ambulance rides, a medical emergency flight, 10 days in 3 different hospitals, and one spell in the Cardiac ICU. As scary as this experience was, without it A Twist of Fate-ATS would never have been created. Because it was in this darkness and confusion that Andrea started reaching out for answers, for support, for anything that would let her know she wasn’t alone. And what she found was a community of people who all wanted the exact same thing as she did.
It seemed like a miracle these families had found each other at all. There were positive responses from the medical community as well as researchers showing interest in analyzing this disease. For the first time, these families had support. The last piece of the puzzle was simple: they needed to meet. And that’s where Chive Charities comes in.
Andrea personally reached out to us for help after hearing that our community fights for the underdog, so she was hopeful we would fight for ATS. She was right. Chive Nation came through with a $54,000 grant that will fly ATS patients and their dependents to Arkansas, where it all began. The three-day conference will feature specialists leading lectures on what we know about ATS so far, as well as what we seek to know in the future. Researchers, doctors, families, and patients will all finally be in the same room together to learn about the past, so they can start to build a future.
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