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news item News Monday, October 29, 2018 Monday, October 29, 2018 11:37 AM - Monday, October 29, 2018 11:37 AM

A cleft journey: Cleft team monitors Terilyn’s speech, hearing and development

Children who are born with a cleft lip and palate typically require care and monitoring for their entire childhood. Terilyn’s parents, Michael and April, are now five years into their daughter’s cleft experience. The family relies on specialists at Shriners Hospitals for Children — Chicago for Terilyn’s surgeries and ongoing monitoring of her health and development. The Chicago Shriners Hospital cleft palate team is also treating the family’s son Evan, age 1, who was also unexpectedly born with a cleft.

Before the school year began, Terilyn’s parents made the trip to Chicago from their home in Northwest Indiana, for what is known as an annual team visit. The Chicago Shriners Hospital staff uses a team approach because a cleft palate affects more than just a child’s smile. Patients see a pediatric plastic surgeon, but also speech-language pathologists; audiologists; ear, nose and throat (ENT) surgeons; orthodontists; dentists; psychologists; social workers; and nurse practitioners. The team evaluates a child and recommends treatments or resources the family might need.

Going into the visit, Terilyn’s ears were a concern for April and Michael. Terilyn has ear tubes and had several ear infections during the past year. Terilyn had her hearing tested in the onsite audiology lab, and had an appointment with an ENT surgeon. Terilyn repeated words and tones she heard through headphones in a child-friendly process. Sara Bachinski, Au.D., an audiologist at Shriners Hospitals for Children — Chicago, said they tested both tympanometry, and speech and pure tone audiometry. “She has perfectly normal hearing in both ears today,” Bachinski said.

“The ears were my biggest concern today,” April said. “We are relieved to know we don’t have to worry about this for Terilyn.”

Kathy Kapp-Simon, Ph.D., a psychologist at Shriners Hospitals for Children — Chicago, has more than 40 years of experience evaluating the development of cleft palate patients. She was also the first specialist April and Michael met at the hospital during their tour prior to Terilyn’s birth. “From the beginning, the team has always been very concerned about the parents. It means a lot,” April said. “In my first visit while Terilyn was still in my stomach I saw Dr. Kapp-Simon. She gave us information to help us be prepared after delivery.”

“For a 5-year-old, we’re looking at emotional development, behavior, early learning skills and a readiness for kindergarten. This is a critical area because children with a cleft are at higher risk of having reading disabilities,” Kapp-Simon explained as she evaluated Terilyn during the annual visit. The visit confirms that Terilyn is doing well with her school readiness in phonics and number skills, and is a confident child who understands how to talk about her facial differences with other kids. Each year her family updates a photo book that Terilyn can choose to show her class to help explain her cleft palate.

Other good news at this appointment includes a family celebration of a milestone with speech therapists. Terilyn can now say high-pressure consonants, including the “T” sound in her name, for the first time!

Plastic surgeon David Morris, M.D., evaluated Terilyn’s repaired lip and palate and her jaw during an exam. To help surgeons see a patient’s bite, tonsils, adenoids and jaw, patients have X-rays during annual visits using the hospital’s on-site panoramic ceph and lateral cephalometric X-ray machines. But it was a low-tech device, a Q-tip, which helped Dr. Morris check the tiny hole still inside Terilyn’s mouth. Dr. Morris will close the hole in a future bone graft surgery, which typically happens when children reach age 8 or 9.

Dr. Morris examines Terilyn

The family wrapped up Terilyn’s annual cleft team visit feeling reassured about their daughter’s progress. They received helpful information about future care and surgeries their daughter may need in her cleft lip and palate journey at Shriners Hospitals for Children — Chicago.

Read more about Terilyn and Evan's story

Shriners Hospitals for Children — Chicago staff is sharing the family's story of two children born unexpectedly with cleft lip and palate to help educate and encourage other parents, and because the family wants other families to know about the life-changing care provided by the Chicago Shriners Hospital cleft team.

A cleft journey: Doctors at Shriners Hospitals for Children — Chicago repair Evan's cleft lip and nose
Evan's second visit to Shriners Hospitals for Children — Chicago
A cleft journey | Baby Evan and Terilyn
Audiologists and ENT surgeons are important part of cleft palate care

Terilyn with her parents at Shriners Hospitals for Children — Chicago Hospital Day