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news News Tuesday, July 16, 2019 Tuesday, July 16, 2019 3:42 PM - Tuesday, July 16, 2019 3:42 PM

A cleft journey: Evan and Terilyn visit cleft palate team together

A cleft journey: Evan and Terilyn visit cleft palate team together

It was a family affair for Evan and his big sister Terilyn as they made their first visit together to the cleft lip and palate team at the Chicago Shriners Hospital, where both are patients and have been seen on separate days in the past. The children’s parents, April and Michael, have allowed the Chicago Shriners Hospital to share their story of having two children born with cleft palates, to help other families who have a child born with the condition.

"Both parents have enthusiastically shared their experiences with other families. This is so important as the information is coming from direct experience and the unique perspective of another parent, rather than from the caregiver," said David Morris, M.D., a pediatric plastic surgeon who has cared for both Terilyn and Evan. "This is a unique aspect of our multidisciplinary cleft team clinic at the Chicago Shriners Hospital where families get to know one another."

Both children had a day filled with appointments with the Shriners Hospitals team of specialists, including plastic surgeons, speech pathologists, psychologists, audiologists, dental and orthodontic professionals, ENT physicians, nurse practitioners and social work care managers. 

Evan, now age 18 months, was having his first team visit since healing from his four surgeries in 2018, which included repairs to his palate, lips and nose, along with tubes for his ears. April, Evan's mother, said the family is so pleased with the results of the surgical repairs by pediatric plastic surgeons. “We thought Terilyn’s surgery was amazing and she looks beautiful, but Evan’s work was like perfection. Even the two little marks on his lip. They are his “trademark” we call them. We tell him that’s the special little stamp you’re going to have for life,” said April.

The team visit included a focus on Evan’s challenges with eating solid foods. Speech language pathologists talked with his parents about the issues Evan is having. He is also receiving weekly therapy at home for his sensory feeding issues. “He is doing well and continues to progress, but it is a very slow process in introducing him to different textures and also understanding the concept of needing to chew his food,” said April.

Terilyn, who is 6 1/2 years old, proudly showed off baby brother to ‘her’ doctors and nurses during her annual team visit. Terilyn conquered her speech milestones in the last year, so this visit allowed the family and her clinicians to discuss the future care expected for Terilyn. “Her next surgery will be a bone graft, but the beginning of that process probably won’t start for a year or so,” said April. The family said letting the children play on the outdoor and indoor playgrounds are always a highlight of visiting the Chicago Shriners Hospital as well.

"Much of our cleft team's effort focuses on educating new parents on how and why facial clefts form and how to support the growth of their child during the early years," said Dr. Morris. "As parents, April and Michael have been remarkable in finding ways to support and augment our efforts. For example, Michael devised a more effective way of taping the nostril support which is used in infants to help maintain the nostril shape early after the surgery." 

Looking ahead this year, Terilyn is so grateful to her Shriners Hospitals medical team that she asked her parents to create a Shriners Hospitals theme for her bedroom. The family took photos with all of her staff team to include in collages that will hang in her newly decorated room. The Shriners Hospitals cleft lip and palate team is happy to have played a major role in giving Terilyn and Evan new smiles for the camera, and looks forward to seeing photos of the new space when it is completed.

Evan and Terilyn in the hospital hallway 

To read more about Evan’s and Terilyn’s journey visit:

A cleft journey: Baby Evan and Terilyn
Evan's second visit to Shriners Hospitals
A cleft journey: Cleft team monitors Terilyn's speech, hearing and development
A cleft journey: Doctors at Shriners Hospitals repair Evan's cleft lip and nose
Audiologists and ENTs are important part of cleft palate care