Transforming Moments

The Road to Three Miracles

When Summer arrived at Children’s Hospital from her home in Pocahontas, Ark. on Aug. 1, 2006, she was at the end of her rope. Struggling with her three children’s medical and feeding challenges since their births, Summer was physically and mentally exhausted. But when she attended her first Children's Feeding Program parent meeting, Summer said, “I just felt like I was home.”

Serving patients since 1998, Children’s Feeding Program at Children’s Hospital assists children from birth to age 21 with medically-based feeding and/or growth problems that may inhibit their ability to drink, chew or swallow. Working with an interdisciplinary team of specialists, the program is one of a few that integrates oral-motor and behavioral approaches to therapy in its day patient and outpatient programs.

Betsy Clawson, PhD, LCP, Behavioral Coordinator of Children’s Feeding Program, said in addition to the combined therapy approach, the hospital’s program is unique because it has staff devoted solely to the program, allowing improved communication and continuity of care. The program also accepts medically-complex patients who may have not succeeded in other programs.

The Journey Begins

Born with Pierre Robin Sequence, a combination of birth conditions that can include a small or displaced lower jaw and a tendency for the tongue to fall back in the throat, four-year-old Rebekah and two-year-old twins Jacob and Matthew, had breathing and feeding difficulties that left them dependent on feeding tubes for nutrition. After Rebekah’s Dec. 2001 birth, Summer noticed that her second child was breathing irregularly. Although she “didn’t want to be one of those moms who takes her kid to the ER for just anything,” Summer took Rebekah to the hospital where she was diagnosed with sleep apnea and jaundice. Two and a half months later, because Rebekah was not gaining weight or keeping food down, she was also given a feeding tube. Over the next 18 months, Summer took Rebekah to specialists in Arkansas, California and Tennessee who prescribed a variety of surgeries, studies and treatments, none of which allowed her to learn to eat by mouth.

When Jacob and Matthew were born in Feb. 2004, Summer said, “I made up my mind if this happened again, I was going to do it different.” Born with a milder version of Pierre Robin Sequence, Matthew and Jacob received early physical and speech therapy and were given opportunities to eat by mouth but ultimately received most of their calories from feeding tubes. By the time they were 18 months old, the boys were “not doing age-appropriate feeding,” and Summer said, “as they got bigger, it got harder to keep up with their growth needs.”

The Road to Richmond

During an appointment with another specialist in St. Louis in 2006, Summer learned about Children’s Hospital’s Feeding Program and in May, scheduled a video teleconference with Ted Williams, MD, Feeding Program Medical Director, Dr. Clawson and Kimberly Ritenour, MS, RN, CPNP, Feeding Program Nurse Practitioner.

“I didn’t know if I was going to get another door slammed in my face,” recalled Summer, “or if someone was finally going to help me.”

During the teleconference, the Feeding team took the children’s medical histories and watched each child eat, “pretty much doing everything but the physical,” said Kimberly, who was impressed with Summer’s level of commitment and willingness to do what was needed to get into the program.

“We ask a lot of our parents before they come and once they get here,” said Kimberly. “Summer demonstrated she was right there with us.” In fact, within a week of the teleconference, Kimberly said Summer had scheduled all the required tests and was ready to go.

With the average length of a day patient stay being 30 days and the program only accepting about six day patients at a time, families often have to wait to begin treatment. And while 56 percent of day patients are from Virginia, 44 percent have traveled from national and international locations such as Arizona, Colorado, Delaware and England.

Making Miracles

By August, three spaces were available so while Summer’s husband stayed home with their oldest child, Summer and her mom drove to Richmond to begin the eight-week program. The day patient program involves approximately six hours of therapy five days a week, including four daily therapeutic meals, input from psychologists and sessions with physical, occupational, speech and recreational therapists as appropriate. Older children also work with the hospital’s educational specialists through the Hospital Education Program.

Brandi Watts, MS, CCC-SLP, treated Matthew for six weeks and Rebekah for her last two. During daily feeding sessions, therapists work on oral-motor exercises and feeding techniques to help children learn to eat on their own. For Matthew, that meant progressing from smooth, pureed food to gritty, chunky purees by getting used to having food in his mouth and learning to chew without gagging or vomiting. While Rebekah’s progress was initially slow, Brandi said she “made huge gains in the last two weeks,” learning to chew and swallow thick purees. (Cynthia Maslyk, OTR/L, worked with Rebekah for the first four weeks to teach her how to swallow.) As part of the program, Summer was taught the same techniques used by the therapists so she could continue reinforcing them at home.

“The whole process is how to teach a family to feed their child at home,” said Brandi. “It’s a boot camp for the family to become the feeding expert.”

Jamie Sue Nance, MS, CFY-SLP, Jacob’s therapist, spent therapy sessions teaching Jacob how to chew and swallow without crying, gagging or vomiting. Using oral-motor exercises to strengthen his lips and jaw, Jamie Sue also used a mesh bag to teach Jacob how to chew food instead of swallowing it whole. During treatment, he began chewing crackers and vegetable sticks, learned to drink from a squeeze bottle, and began accepting food from Summer without crying.

Light at the End of the Tunnel

“I feel so privileged to be here,” said Summer a week before returning to Arkansas. “Last night Matthew fed himself a whole green bean when he used to only want a bottle. It’s just a miracle.”

Dr. Clawson also is thrilled with the children’s progress. She said the boys progressed toward more age-appropriate skills like self-feeding and eating table foods, mom and grandma were able to feed the kids and manage meals without power struggles, and Rebekah learned to chew and swallow, skills she didn’t have when she arrived in August.

Although patients must be medically stable, including having good airways and a safe swallow, Dr. Clawson said the program has accepted children, like Rebekah, who have never swallowed before. “I’ve seen kids do amazing things in this program. You never know until you give them a chance.”

Once the family returns home, they will still have access to the Feeding Program’s staff and expertise. Phone calls and e-mails are encouraged, and video teleconferencing is available for follow-up consultations. Children’s Hospital also has a training tape for out-of-state therapists to teach them how to continue working with the children.

Summer plans to continue reinforcing the techniques she learned at Children’s Hospital to make mealtimes more pleasant and help her children grow and thrive. “I see light at the end of the tunnel. I feel like such a weight has been lifted.”

Editor’s note: In Oct. 2006, Rebekah started a pre-kindergarten program in Arkansas where she eats lunch five days a week. Matthew and Jacob have maintained their weight since returning home and are continuing to eat the foods they learned to eat while in Richmond. “Because of kids like Rebekah,” said Summer by e-mail after returning home, “and all the heartache we as parents go through with and for them, others learn and learn what works. Jacob and Matthew are milder in terms of Pierre-Robin because we had her as an example. I have great comfort in knowing that even though my kids have been made the example, not the exception, that it was not for nothing.”

Back to Transforming Moments

The information on this site is provided for informational and educational purposes only; it does not contain specific medical advice. If you have specific health questions or problems, consult a health care professional for personal medical advice.