"What Are We Going to Do If She Doesn't Eat?"
Christy and Mark Leiter have been married for more than a decade. In addition to Vivian, 7, and Eleanor, 2 going 3, their family includes four-legged friends Finley — who's 10 — and Scout, not quite a year old, a pup who has rarely met anything — including Eleanor’s shoes and all those great toys in both girls' rooms — that he didn’t find appetizing.
While Vivian was a preemie, Eleanor was delivered full term. Still, early on, Eleanor showed signs that her development wasn’t progressing as expected.
"When she was about 6 or 7 months old, she still was not rolling over or sitting up," Christy said. "She just hated tummy time. She was just super weak."
A trip to her pediatrician led to a neurologist. And specialists. And testing. So much testing.
An MRI of her brain. A blood test for muscular dystrophy. Micro array. Genetics testing for any underlying issues that might be revealing themselves just now.
While results were sometimes slow to come, physical and occupational therapies were the initial prescriptions. The most pressing issue was her appetite.
"When she was about 10 or 11 months old, she was still just breast feeding at the time and wasn't really eating anything," Christy said. "I went back to her pediatrician: 'She's not eating and I feel like something is ... I don't know.'
"What are we going to do if she doesn't eat?"
More referrals, more doctors. Eleanor's first birthday came with an entourage beyond her family. Experts at the Pediatric Feeding Clinic at Nationwide Children’s Hospital in Columbus, Ohio, made their assessment: "She's failure to thrive. She's extremely malnourished. She needs to get a feeding tube," Christy said.
An NG tube through her nose went in for the first days at the hospital. Now, Eleanor has "a G tube, which is the hole in her stomach, a little button," Christy said.
"I felt like I failed her."
She hadn't, of course. But for all they knew and were learning, they still didn't have their why.
And then they did: Chung-Jansen Syndrome.