Novelett Cotter knew something was wrong with her son, Christoph McKenzie. The chest pain. Stretch marks that came and went. Extreme double-jointedness. In 2008, at 24, he was diagnosed: Marfan’s syndrome, a genetic disorder that affects connective tissue and the aorta. Then came surgery — his weakened aorta was replaced with a mechanical valve. He took blood thinners and avoided exertion.
Two years later, the chest pains began again. Awaiting cardiac surgery at Harborview Medical Center, McKenzie started to convulse. As doctors rushed to revive him, his mother bolted from the room to call her sister, but when she tried to return, a young woman gently stopped her. Pulling Cotter aside, she explained that McKenzie was suffering from heavy internal bleeding and might not survive. Unfortunately, she was right.
In life, McKenzie was outgoing and affectionate, training to become a pharmacy technician. In death, he inspired the lives of two women: his mother and the young woman — Sherene Shalhub, M.D., MPH, then a general surgery resident — who’d broken the news in the hospital hallway.
Shalhub never forgot about McKenzie. “He was so young, and it was so devastating for his mother and his family,” she says. “It made me feel very helpless. I decided I wanted to learn as much as possible about Marfan’s and try to help people have better quality of life and better outcomes.”
In the meantime, Cotter grieved. The death was so sudden and unexpected. “We thought that he would be around for a long time,” says Cotter. “There would be health challenges, but we were prepared for that.” Another source of grief: she thought that people would simply forget her son.
Years passed. Then, in early 2018, Cotter went to a nail salon for a manicure. While waiting her turn, she kept sneaking glances at a familiar-looking man who was sitting nearby with his daughter, trying to place him. Finally, she asked him if he was a doctor, and he said he was. A surgeon? Yes, he said, a vascular surgeon.
“I said, ‘I’m Christoph McKenzie’s mother,’ and he jumped out of the chair and hugged me!” Cotter says.
It turned out that this surgeon — Ben Starnes, M.D., FACS, chief of UW Medicine’s vascular surgery division and the Alexander Whitehill Clowes, M.D., Endowed Chair in Vascular Surgery — and Shalhub had both overseen McKenzie’s care at Harborview. It also turned out that they had not forgotten the young man. Far from it. In fact, they wanted to create a memorial fund in McKenzie’s name.
Starnes also told Cotter that Shalhub had dedicated her career to researching genetically triggered diseases of the arteries and aorta. “Suddenly, I remembered that lady who met me at the door,” says Cotter.
Soon after, Starnes, Shalhub and Cotter met in person for an emotional reunion — and to plan the creation of the Christoph McKenzie Memorial Fund for Aortic Dissection Research.
“I wanted his family to know that because of their son, we’re doing all this work,” says Shalhub. “It’s a way for people to support the research, helping to bring the resources together and advance science.”
The first project supported by the new research fund is a risk calculator that will help assess a patient’s genetic profile, family history and other factors to predict the likelihood of an aortic rupture like McKenzie’s — and to enable doctors to offer earlier interventions to high-risk patients. With early diagnosis and a comprehensive care plan, Shalhub says, patients with Marfan’s can have a better life expectancy.
For her part, Cotter is overjoyed that the research fund is one way her son can help others. And she’s ready to help it succeed.
“If Christoph can make an impact on others who have Marfan’s, then his death might not be in vain,” his mother says. “On his behalf, I’ll be working. I’ll spend the rest of my days helping however I can.”