Laura's Story

When Jeffery and Rebekah Fish found out that they were going to have a baby, they were understandably thrilled.

"Even before she was born, we sang to the baby," says Jeffery. "We named her ahead of time." They had big dreams for Laura, but they also wanted that most basic of things: a happy, healthy baby girl. That was not to be.

Because of complications with the pregnancy, doctors were forced to leap into action and induce labor early. Then they immediately sent Laura to a pediatric intensive care unit. While most mothers get a chance to hold and bond with their newborns, Rebekah got a Polaroid.

The doctors were able to save Laura, but her fight was far from over. She was diagnosed with Down syndrome, and she never learned the suck and swallow pattern necessary to eat-a seemingly simple thing that would impact the rest of her life.

Rebekah and Jeffery found it hard to believe that their daughter couldn't eat, something that seemed like it should come so naturally.

"We pulled the tube out," Jeffery recounts. "We said, 'let's leave it out.' We were just using common sense. You think, when she gets hungry, she'll eat." But it didn't work, so Jeffery and Rebekah began to look for answers. They traveled across the state and across the country to different feeding programs, with no success.

"We were at a standstill," says Rebekah. Then their search led them to the Kennedy Krieger Institute.

On November 13, 2006, Rebekah and Laura boarded a plane and flew from their home in Oklahoma to Baltimore to pursue what felt like their last hope. Since Laura was older and more medically complex, and because she had never eaten anything by mouth, the treatment team set a small goal for her: to complete a swallow study. There would be little more the team could do, if the study was not successful. Fortunately, it was, so Kennedy Krieger's experts went to work using a variety of evidence-based practices to help Laura.

First, they had to tackle some of her behavioral issues. Because of her aversion to eating, she would spit or refuse to let anything near her mouth. The therapists also faced some of Laura's physical challenges. Because of the low muscle tone caused by her Down syndrome, Laura had "tongue thrusting," which made it hard for her to eat.

Seven days later, Laura swallowed two bites on her own.

"It was like me eating an elephant," Jeffery says of the seemingly small feat. "She had never put anything down in her stomach from her mouth. And it just snowballed. Every feed they were getting more and more down her."

Rebekah, watching from an observation room, was beside herself as she saw Laura take those miraculous first few bites.

"I wanted to just go in there and hug her," she says.

Despite her progress, Laura's struggle wasn't over. There were still days when, in tears, she refused to eat, fighting the spoon away, but she continued to make gains.

Now Laura is eating more and more on her own. Although she's not quite ready to eat an elephant, her mom is happy to indulge Laura's latest craving - soft-serve ice cream.