Chemical engineer mother works to help kids on feeding tubes

Dec 17 2008

Dr. Stephanie Farrell's daughter Phoebe is barely five and, along with French fries and pizza, she loves sushi, Thai and Indian food, and tacos.

As a parent, Farrell knows that's pretty spectacular for a kid who spent two years of her young life on a feeding tube.

As an associate professor of chemical engineering at Rowan University in Glassboro, N.J., Farrell believes that it's important to put her engineering skills to work to help other youngsters on feeding tubes.

Phoebe's story started when she was 16 months old, three months after Farrell and her husband, Peter, adopted the wide-eyed little girl from China. Health problems led to the tube feeding, and her parents discovered that the longer she received her nourishment that way the less she was interested in eating food.

The tube originally supplemented what Phoebe ate by mouth, but that did not last. "As is common with many kids, she just stopped eating completely," Farrell said. "It was tough. When we increased the tube feeding, it just made it more likely she'd become more reliant on it."

Farrell and her husband brought their daughter to a world-recognized feeding clinic, but nothing changed. The clinic used a method of rewarding children with toys when they took a bite of food, an approach that Farrell said is prevalent in the United States.

"She didn't want a toy," said Farrell, of Philadelphia. "What she really wanted was not to eat. So, she didn't eat. We kept increasing her tube feeding to meet her growing nutritional needs. We felt completely trapped by that."

Phoebe did gain weight and develop well with the tube feeding, but the situation was less than ideal in her parents' minds, and the then-toddler experienced problems many others face, including her tube clogging. Her parents began looking for other answers in the United States, exploring ways some children were weaned off feeding tubes. "We found no alternatives to the behavioral approach that we were already using," Farrell said. "It's like when Dr. A gives you aspirin and Dr. B gives you aspirin, it's still aspirin."

Through a friend, however, they learned of a clinic in Austria that uses an alternative approach to wean children off feeding tubes. The Tube Weaning Clinic at the Medical University of Graz in Austria uses a very different strategy that relies on a child's innate sense of autonomy Program personnel believe, Farrell said, "The child will eat when the child is hungry. The kid - not the parent -- has to want the food."

As part of its program, Graz medical staff stop feeding children through a tube and teach them to connect the concept of hunger to food, all while asking parents not to comfort the children in other ways. "It's extremely hard, but it made a lot of sense," said Farrell, who traveled with Peter and Phoebe to attend the three-week program in March 2007.

Graz also offers children physical, occupational and speech therapy and something they call Spielessen, or "play picnic."

In Spielessen, staff members every day place various types of colorful food on little dishes on a sheet on the floor. They choose the foods for sensory value - some are salty, some are sweet, some are smooth, some are crunchy.

Initially the children may cry, but eventually they get curious and try to satisfy their natural impulses for exploration. Creative play with food is the main goal, and this provides the opportunity for the child to take initiative in learning to eat. The social aspect - all those children exploring the plates of food - also has an impact, the professor said. "If one kid is eating something, another kid might try it," she noted.

A tired Phoebe - whose parents were pretty exhausted by then, too -- took her first bites of food three days into the program. "It was emotionally and physically draining, but we were excited."

While Graz is known for an exceptional success rate with its signature tube weaning program, Farrell said it does other work as well, and she has been impressed. She approached two doctors there to collaborate on research to investigate ways to mitigate tube clogging. This fall, Farrell - in conjunction with Rowan engineering students - has been conducting lab studies exploring why tubes clog as part of an engineering clinic held at the highly ranked college. While adults' tubes have been studied before, there is little information available on small tubes and formulas used with infants. Ultimately, the Rowan team hopes to reduce incidences of clogging, possibly by improving tube design or feeding protocols. Meanwhile, the Austrian physicians will be conducting clinical work in conjunction with Farrell's lab work.

"I suspect clogging is such a big problem with kids because the tubes are so small and the flow rate of the formula is low," said Farrell, who said an alarm - which she still "hears" at night - goes off when a tube clogs. While clogging isn't generally a danger to the children, it does stop the delivery of nutritional formula temporarily. Both patient and caregiver may be awakened several times per night by clogs, and severe clogs require a new tube to be inserted.

Farrell, who said her daughter has become quite an adventurous eater and loves her vegetables, is pleased to be a part of the research. "My hope," she said, " is that I can make a difference for somebody else."