When Lyndsey Warnick turns nine this year, her parents hope she’ll eat a piece of cake. Like many new parents, they looked forward to her first birthday with anticipation. Each year, they’ve celebrated her birthday with balloons, presents, and ice cream.
However, they’ve never had the chance to see Lyndsey eat a piece of her birthday cake.
Lyndsey, who was diagnosed with DiGeorge Syndrome as a newborn, spent her first five months in the hospital and still receives most of her nutrition through a tube inserted in her stomach. She is gradually learning to eat solid foods.
DiGeorge syndrome is a chromosomal defect that results in the poor development of several body systems. Associated problems vary widely but may include heart defects, hearing loss, cleft palate, or low blood calcium levels. Almost everyone with this syndrome needs therapeutic support of some kind.
Under the care of Bayhealth Pediatric Speech Pathologist Jennifer Crouse, M.S., CCC-SLP, Lyndsey focuses on therapy related to communication and feeding. A tracheostomy tube in her throat helps her breathe, and she uses a DynaVox communication device to assist her in conversation.
In addition to speech therapy, Lyndsey’s regimen also includes a series of oral exercises which improve her ability to eat food. Side effects of DiGeorge syndrome can make eating and swallowing uncomfortable or even painful. Over the last eight years, Lyndsey has developed a fear of food because eating is unpleasant for her.
As a baby, Lyndsey underwent open heart surgery and other procedures to address complications caused by DiGeorge syndrome, but for her parents, those operations pale in comparison to the daily challenges involving meals.
“The surgeries, spending time in the hospital—all that seems very distant to us now,” said her father, Allan Warnick. “The doctors told us eating would be the biggest struggle, and it has been.”
“Seeing the things other children eat normally is very hard for her, and for us,” said Robin Warnick, Lyndsey’s mother. “Preparing a meal becomes a huge challenge when you have to puree every dish.”
Crouse introduces food into each therapy session, involving Lyndsey by asking her to select and help prepare a snack. One appointment might feature applesauce; the next, soft boiled carrots.
Part of the challenge for Crouse and the Warnicks is discovering new ways to motivate Lyndsey. Typical strategies include sticker charts, rewards, and competitions—the standard tactics all parents use.
Enter Jack, the Pembroke Welsh Corgi who works at Bayhealth Outpatient Rehabilitation Services, Dover, with his owner, Kayleigh Karnbach, Physical Therapy Aide and Registrar.
For every bite of food she eats, Lyndsey can feed Jack a piece of string cheese.
To an animal-lover like Lyndsey, whose pets at home include a rabbit, fish, collie, cat, and horse, the chance to play with Jack is a major motivator.
Although she used to break baby puffs in half before nibbling them, Lyndsey now tries a wider variety of food, thanks in part to Jack’s support.
“Lyndsey looks forward to coming here. She works hard in therapy, but she enjoys it. It helps her forget some of her struggles,” said Allan Warnick.
When Lyndsey sees Jack in Crouse’s office, she snuggles up next to him on the floor, petting him and grinning. Aside from her trach and feeding tubes, Lyndsey is a normal little girl who loves games, hugs, and giggling.
“It can be hard for Lyndsey to relate to other children sometimes. They don’t always understand her when she talks, or they are nervous about her support needs. Jack is a wonderful surprise for her after a day at school,” commented Robin Warnick.
Crouse is proud of her patient’s progress. Her goal for Lyndsey is to soon eat lunch at school with her friends, consuming 50% of her nutrition by mouth.
“I would love to see Lyndsey start to view food as something enjoyable, something she can share with friends and family. Over the last few months, we’ve seen her try foods I don’t think she would have attempted without Jack’s help,” Crouse said.
Allan Warnick agreed. “This past year has been a miracle, seeing Lyndsey progress. Maybe this year, I’ll get to see her eat some cake.”
To learn more about Bayhealth’s Outpatient Rehabilitation Services, visit bayhealth.org or call 302-744-7095.