By Jason Singer, Spectrum Health Beat
Lauren Whitaker spent long stretches of her childhood in the hospital.
Minor colds turned into pneumonia. Even when she wasn’t hospitalized, “my parents basically ran a hospital at home,” she said. They treated her daily with lung exercises, breathing treatments and a special mechanical vest that helps move fluid through her respiratory system.
“I was kept away from kids, play dates, birthday parties,” Whitaker, 17, said. “And no preschool. They didn’t want me to be exposed to viruses. I was prone to getting sick often and for a long time. And it happened so much doctors were worried my lungs would become damaged.”
Whitaker was born with tracheomalacia, a condition in which the cartilage that keeps open the trachea, better known as the windpipe, is soft and frequently collapses.
The condition restricts airflow, which allows fluid to frequently build up in Whitaker’s respiratory system. And when Whitaker coughs, the trachea can close, which prevents the fluid from clearing out.
For every 100 children with asthma, about two or three have Whitaker’s condition, said John Schuen, MD, division chief of pediatric pulmonology and sleep medicine at Spectrum Health Helen DeVos Children’s Hospital.
There are no good surgical options, Whitaker was told. There are no long-term cures.
But after years of suffering—hospitalizations every four to six weeks, missing kindergarten, missing out on playdates with other children—Whitaker and her family found a remedy in an unlikely place.
The music room.
Whitaker learned to play the flute in fifth grade. She fell in love with it a couple years later. It has not only contained—and mostly solved—her medical issues, it has given her a life path.
“She’s really turned a disability into an ability, and it seems to be a tremendous ability,” Dr. Schuen said. “Now she’s on the cusp of launching a brilliant, brilliant career.”
‘Like beavers building a dam’
Dr. Schuen first met Whitaker at age 4. Her family had been struggling with her recurrent pneumonia.
“She was in and out of hospital, in and out of our office, in and out of her primary doctor’s office when we first met,” Dr. Schuen recalled. “This has been something that’s been ongoing ever since she was born.”
In a healthy person, Dr. Schuen said, the airways produce thin watery secretions, which are constantly moved and which provide defense against germs and trap inhaled particles such as dust and dirt. The secretions eventually move to the throat and mouth, where they’re coughed out or swallowed, thereby protecting the lungs.
“The airways are like tiny streams or streamlets that join up to bigger rivers, until they dump into Lake Michigan,” the doctor said. “That would be what’s normal.”
But with tracheomalacia, “it’s kind of like beavers building a dam in the middle of the river,” he said. “The water doesn’t move normally. It pools behind the beaver’s dam and it just stands there. It’s great for beavers trying to make a home, but not good for homeowners.”
The buildup of fluids in the respiratory system makes infections and bronchitis much more likely, he said.
Dr. Schuen had a suggestion: In addition to daily chest exercises and use of the vest, he recommended Whitaker learn a wind instrument. It could strengthen her lung function.
If the lung muscles were stronger and produced more air and pushed that air through Whitaker’s system more forcefully, she could more easily blow through that dam, reopening the river of air.
Whitaker and her parents took his advice.
In fourth grade, her school had a presentation about joining fifth-grade band. Whitaker jumped at the chance.
“Dr. Schuen said it would be a good thing for me to play an instrument,” she said. “He said the quality and quantity of life would be better with an instrument. But honestly, I just wanted to do it. Obviously there were health benefits, but I was like, ‘Oh, an instrument, that sounds cool!’”
She originally chose the clarinet, but couldn’t produce a sound. But she was one of only two children who could produce a sound on the flute, so she said, “Let’s do this one.”
By seventh grade she began taking it seriously, practicing more and more each day. And sure enough, her health slowly improved.
“I started getting less sick with colds,” she said. “It wouldn’t hit me nearly as hard. … When I get sick now, it’s just a minor cold, not 15 days in the hospital.”
Aiming for a career
Whitaker has turned her condition into a strength.
Before her senior year of high school, she enrolled at Interlochen Center for the Arts, a boarding school with an acclaimed music program.
“I went to their summer camp for one week and liked it so much I wanted to stay the whole year,” Whitaker said.
The flute program has only 14 students, half of them international. Only two are from Michigan. Most of the curriculum is arts-based. She takes two academic classes and the rest of her curriculum is courses like music theory, band, chamber music and orchestra.
She plays the flute as many as eight hours per day. She won two concerto competitions in 2017. And she was recently accepted into the prestigious New England Conservatory of Music in Boston.
She hopes to make a career as a flutist.
“We keep our fingers crossed,” said her mother, Laurie Whitaker. “It’s a very, very competitive field. But it’s really been neat. She got to play at DeVos (Performance Hall). She got to do a solo. It was quite an honor.
“It’s been a wonderful journey,” Laurie added. “Her health has been so great, partially because she’s playing a ton. When she gets sick, she picks up the flute and she feels like she can breathe better. And now she sails through colds and viruses like her peers. … I’m just so proud of her.”
Dr. Schuen called Whitaker’s story inspirational. The idea that a disability can be turned into an ability with the right mindset and commitment, he said, could resonate with a lot of patients.
“She’s turned a negative into a positive,” he said. “She could wind up going to Juilliard, Boston Conservatory, she could play with national or international fields.
“There are many people who have problems like Lauren. But she and her parents were, (1) proactive, and (2), very positive and innovative. When we made suggestions, they ran with it. … Lauren’s an incredible young woman. I’m really happy and excited for all of them.”
Learn more at the pediatric specialty care available at Helen DeVos Children’s Hospital, including the nationally-ranked pediatric pulmonology program.
Reprinted with permission from Spectrum Health Beat.
