The Children's Institute Blog

Feeding Breakthrough: Juliette's Story

Posted: Feb 09, 2018 by The Children's Institute

Kerry Ann Stare is familiar with the sound – the screeching of her daughter Juliette, now nearly 2, dragging the chair across the kitchen floor to sneak a tasty snack from the out-of-reach cabinet.

“She’ll drink water, she’ll drink juice, she’ll drink those yogurt-drink-type things,” Kerry Ann said. “We have to discipline her for going up into the cabinets to get food she wants.”

It wasn’t always this way.

Born Feb. 24, 2016, Juliette quickly showed a lack of interest in feeding, be it with breast or with bottle. Whenever she did feed, she’d gag or scream or both. Kerry Ann, who has an older daughter, tried to treat it as reflux and find the right approach to feeding. Nothing worked. In less than two months, Juliette was admitted to Children’s Hospital of Pittsburgh for “failure to thrive.”

“It was very difficult to get [doctors] to accept that feeding was uncomfortable for her,” Kerry Ann said. “We had scopes. We had the swallow study. We did everything.”

By June, they had surgically inserted a G tube for feedings.

“I felt pretty hopeless because, at that point, she wouldn’t swallow anything at all,” Kerry Ann said. “This is the most basic human instinct – to feed yourself to survive – and she didn’t have that.”

Enter The Children’s Institute of Pittsburgh.

At the same time she had her G tube inserted, Juliette became one of approximately 230 patients per year admitted to The Children’s Institute’s outpatient and inpatient functional feeding programs.

“They just needed our therapy,” dietitian Jodi Smith said. “I think it’s just that we get it. We know what these Moms are going through and we establish goals we know they’re going to meet.”

“And kids know – they know when something’s not right. And they’ll stop eating if they can’t breathe or they get reflux,” Jodi added. “It’s not about likes or taste. It’s about survival and feel. It’s a learned behavior. And we just have to figure out why.”

So, the clinicians here continued to experiment with bottles, eventually finding that Juliette would drink from the clear squeeze bottles used to apply hair dye, if she had a special tube. This way, she controlled her intake and could anticipate the amount of liquid she was ingesting.

Within months, there was forward progress and the little girl “graduated” from the feeding program – the only remnant of her G tube was the scar from inserting it.

“It was a completely different experience [at The Children’s Institute],” Kerry Ann said. “I told [the clinicians] her symptoms and I told them her stories. I kept expecting them to say, ‘We don’t know what to do.’ They weren’t mystified. They weren’t intimidated. They just knew what to do.”

A lot of that is experience and taking a holistic approach to treatment, said speech-language pathologist Marybeth Trapani-Hanasewych, who worked with Jodi on Juliette’s feeding therapy.

“We look at the whole child and family and we listen to what they’re saying,” Marybeth said. “We modify the strategies based on their feedback – it’s not a one-size-fits-all. And I think we also really share in the joy of their progress.”

“Kerry Ann’s still so excited about it – and we are, too,” she added.

Today, Juliette eats even better than her older sister, Kerry Ann said.

“You would never imagine that for the first year of her life, she didn’t want to put things in her mouth and eat,” she said. “If you had told us back in June of 2016, that, ‘Not only will she be eating, but you’ll be after her for climbing up to get food or snatching people’s cups’ – I’d never have believed it.”

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