By Roy Lincoln Karp
Special to the Reporter
We sit in a tight semi-circle of chairs and watch our children through a one-way mirror, the kind you see in police interrogations on TV. On the other side of the glass, each of the five kids is paired with a Speech-Language Pathology student from Emerson College. The grad students are supervised by Arden Hill, a highly regarded SLP whom we jokingly call the feeding whisperer.
“There goes Arden!” one of us says as she marches over to a child who is refusing to take a bite. Arden has high expectations for her kids and is not shy about giving them tough love. We all start laughing, a moment of levity shared with other parents who “get it.” Welcome to Food School!
Since October 2014, our daughter Lucy has received all of her nutrition by feeding tube. Before she came home from the Beth Israel NICU, she had failed her swallow study, which determined that she was silently aspirating her feeds. She was declared “NPO,” meaning we could not feed her anything by mouth without compromising her already fragile pulmonary health.
When Lucy passed her swallow study five months later, we were excited to start feeding her again. But during that time, she lost her ability to eat, which typically develops from the “suck-swallow-breathe” instinct of newborns. So began the years long effort to teach Lucy how to eat.
For the next two years, she received feeding therapy through Early Intervention. She had a long way to go before she would even tolerate food in her mouth, let alone swallow anything. Calling our efforts “feeding” seemed like a constant failure, so we decided to call it “oral practice” instead.
Food is emotional. It can be hard to watch other parents feed their young children without thinking twice about it. “It must be nice to just hand your child a pouch of puree and watch them gobble it all down,” we have often thought to ourselves but, of course, have never expressed out loud to others.
Having a child who cannot eat is also isolating. Even friends and family who know Lucy’s story don’t really understand why she is still not eating. Well-meaning comments like “my child was a fussy eater, too,” further widen the gap separating us from parents of typically developing children.
Oral practice sessions with Lucy are stressful. She has a strong gag reflex, which at one point was triggered by food merely touching her lips. Additionally, we don’t want her to have negative associations with eating and develop an oral aversion, which can be difficult or impossible to overcome. All of this conditioned us to fear putting food in her mouth.
As we neared Lucy’s third birthday, when she would age out of Early Intervention, we met with Arden Hill at her outpatient clinic in Needham. She conducted a thorough assessment and helped assuage our fears that Lucy would never learn to eat for neurological reasons. She also enrolled her in a weekly Food School session and came up with a game plan.
Since last spring, Arden and her students have worked painstakingly to break Lucy of habits, such as forming a wall with her tongue to keep food out. Her instinct to protect her airways was a good one, but it also is what’s making it so difficult to feed her.
By fall, she was beginning to tolerate small boluses of puree in her mouth, even passively swallow them. In January, she took her first volitional swallows in Food School. Two days later, we fed her apple sauce at home and she swallowed ten bites. The day after that, she swallowed 24 bites without gagging or body shuddering, which she often does when she gets overwhelmed.
Tears welled up as I placed spoonful after spoonful of apple sauce into Lucy’s mouth. It felt surreal, even magical, to place food in her mouth and not watch it all dribble down her chin and into her bib. The food was disappearing. She was eating food for the first time in her life.