She’s only 8 years old, but Kate Elliott recently got a bit of an extreme makeover, donating 10 inches of her long sandy brown hair to the charity Locks of Love. Not only was she eager to see her tresses go to benefit a child in need, but she was also ready for a big change herself. “I want a whole new me,” she explained to her parents, Kristy and Todd.
It was a sign that Kate — who has endured more than her share of health challenges in her young life — was finally feeling better and ready for her next chapter. Born with anomalies including a tethered spinal cord, scoliosis and cardiac defects, she’s no stranger to doctors and hospitals. But it was her struggle with tracheomalacia that led to what Kristy calls “the scariest two years of our lives.”
While she was still a baby, Kate would turn blue during or right after she nursed, going completely limp in her mother’s arms and necessitating calls to 911. The family saw a series of specialists at different hospitals in Connecticut and New York, but no one could determine the cause of these frightening episodes.
By the time she turned 5, Kate seemed to have outgrown the blue spells, but was in and out of the hospital with pneumonia and other respiratory infections. “We basically stopped leaving the house during the winter,” remembers Kristy. “Any time a child in Kate’s class was sick, we had to keep her home from school.”
Worse, the little girl had no energy. The third of four girls, she loved watching her sisters play soccer and hockey, but couldn’t keep up when she tried to participate for even a few minutes. “We just assumed that things would be like this for the rest of her life,” says Kristy. “We had seen what seemed like every doctor in the tri-state area but couldn’t get answers. It was an incredibly helpless and hopeless feeling.”
‘She didn’t have to live like this’
When evaluation and treatment of tethered cord, scoliosis and other concerns brought the family to pediatric neurosurgeon Dr. Benjamin Warf and orthopedic surgeon Dr. John Emans at Boston Children’s Hospital, Kristy mentioned Kate’s respiratory symptoms and recurrent bouts of pneumonia. They suggested that she might have tracheomalacia, a narrowing or collapse of the airway that can make it feel hard to breathe and results in coughing, recurring respiratory illnesses and, eventually lung damage. They referred her to Boston Children’s Esophageal and Airway Treatment (EAT) Center.
During her first conversation with EAT’s registered nurse, Dori Gallagher, Kristy knew she had made the right decision. “When Dori asked if Kate coughed when she drank, I said ‘of course she does.’ I thought it was just a quirk,” says Kristy. An appointment with surgeon Dr. Thomas Hamilton confirmed the diagnosis of severe tracheomalacia. “I broke down and cried. For once we had hope that Kate didn’t have to live like this — that she could just be a kid.”
A dramatic difference
Two weeks after that meeting, Kate underwent a successful surgery to repair the problem. Although it’s only been a few months since that procedure, the difference is dramatic. Kate now sleeps soundly through the night, without the snuffling or gasping noises she once made. Even better, she has enough energy to enjoy afterschool play dates with her friends and is eager to try engaging in sports again. “She’s a force to be reckoned with,” says her mother.
Her parents know that her care is ongoing, but they feel comfortable knowing she’s in good hands. “Boston Children’s is like home to us — we’re understood, not viewed like some experiment,” says Kristy. And Kate seems to feel the same way. “She lights up when we tell her we’re coming to Boston. It doesn’t faze her, because she knows that everyone at the hospital is helping her.”
Learn about the Esophageal and Airway Treatment (EAT) Center.