April and Michael knew exactly where to turn when an ultrasound indicated their son, Evan, would likely be born with a cleft palate. That’s because the family had found compassionate support and medical expertise in the multidisciplinary team of specialists at Shriners Children’s when Evan’s older sister, Terilyn, had the same diagnosis years before. Many parents like April and Michael trust Shriners Children’s and our cleft and craniofacial care teams to repair and restore their child’s physical, psychological and social health.
Carefully planned, team-based procedures
Scott Rapp, M.D., holds a patient with cleft lip and palate treatment needs.
For a patient with a cleft diagnosis, the medical journey can span their entire childhood. Although the cleft palate and lip typically are repaired within the child’s first year, as many as nine surgeries may be needed to the mouth, jaw and nose as a child grows into adulthood. Surgeons at Shriners Children’s guide families in the timing of procedures and surgical approaches that will improve their child’s physical health – their eating, hearing, breathing and speaking – while also creating the best possible appearance.
Each patient receives a customized treatment plan and is cared for by a multidisciplinary team.
“We often see children who need ancillary services like neurology, ophthalmology and orthodontics, so it’s critical that we treat the patient as a complete team,” said Scott Rapp, M.D., a surgeon at Shriners Children’s Ohio.
Evan‘s journey started when he was first born. He has had several corrective surgeries since.
Each child’s comprehensive care team may include a plastic surgeon, orthodontist, otolaryngologist, speech therapist, dietitian, pediatrician and geneticist, as well as other associated specialists. Often these team members can be seen in the same building, creating a continuity and convenience that parents appreciate.
Evan, who was born with a bilateral cleft lip and palate, had four surgeries in 2018 at Shriners Children’s Chicago, including a two-step repair to his upper lip, repair of his palate and tubes inserted in his ears.
Providing expert care for feeding and speech
Patients often work with speech-language pathologists, since having a hole in the roof of their mouth can cause feeding difficulties and speech challenges.
Sarah Richards, MS, CCC-SLP, works with Veronica on her speech.
Babies with a cleft need to use specialized bottles that don’t require the use of oral pressure, explained Sarah Richards, MS, CCC-SLP, a speech-language pathologist at Shriners Children’s Chicago. At Shriners Children’s, we provide these special bottles, in addition to evaluating feeding techniques and success.
Over half of children born with cleft lip and palate will require speech therapy at some point in their lives, typically before age 5. Richards said cleft palate patients may have difficulty with high-pressure consonants like P, B, D or T. “Because the child will come up with clever and inaccurate ways to try to say those sounds, those incorrect early speech patterns will have to be worked on later in speech therapy,” she said.
Veronica was 4 when she started weekly speech therapy. First she worked to master her consonants, then she was able to move on to other sounds. “Veronica made tremendous progress,” Richards said. After 17 months in therapy, Veronica felt more confident speaking and was no longer shy around adults or kids.
“Shriners Children’s Chicago has great doctors and therapists,” said Veronica’s father. “It is a place to go when your child needs help.”
Each child leaves with a smile
Families can expect additional surgeries after the initial flurry of repair procedures during the early years. Between 6 and 9 years old, patients born with cleft lip may need a bone graft to fill in the missing bone in the child’s jawline.
David Reisberg, DDS, specializes in repairing and replacing teeth for patients with cleft lip and palate.
Almost every child with a cleft will also need final corrective surgery after their facial structure is done growing in the late teen years. Once facial bones are in the correct positions, cleft rhinoplasty (a nose and lip surgery) is performed. While nearly all children who have a cleft will need braces (orthodontia), a smaller percentage of teenagers will also need orthognathic surgery – surgery on their jaw.
“If there’s a cleft lip involved, patients are usually missing at least one tooth in the cleft site, sometimes more. And if it’s a bilateral, they may be missing one on each side,” said David Reisberg, DDS, a pediatric dentist at Shriners Children’s Chicago and one of a few hundred specially trained prosthodontists in the country. A prosthodontist specializes in repairing natural teeth and replacing missing teeth.
For Shriners Children’s patients with a cleft, specialists use dental implants with a bone graft to fill the hole. These grafts typically use the patient’s own bone, taken from their hip. “We place the bone graft, and five months later, we do an X-ray to ensure the graft has taken,” said Dr. Reisberg.
For younger patients, Dr. Reisberg may be called on to insert a speech-aid prosthesis. This is an interim prosthetic to plug the hole in the palate, which allows children to speak more typically until they are ready for their final surgical repair.
Worth the trip
Evan’s parents have appreciated every step of his care journey.
All of this advanced care at Shriners Children’s locations across the country is provided regardless of families’ ability to pay or insurance status. Even with the peace of mind that brings, visiting the Shriners Children’s team every six to 12 months can feel daunting. Still, families say the process is worth it to reach the goal of giving their child a healthy, independent life and a smile they like.
“We thought Evan’s work was perfection – even the two little marks on his lip,” April said. “They are his trademark. We tell him that’s the special little stamp you’re going to have for life.”
Research Study Sends Science Home
Sleep apnea is common among patients who have a cleft as well as patients who need orthognathic (jaw) surgery. However, diagnosis involves an overnight stay in a sleep lab, which takes the child out of their normal sleep environment and may require significant travel for the family.
“My new study offers an alternative,” said Chad Purnell, M.D., a board-certified plastic surgeon at Shriners Children’s Chicago who specializes in craniofacial surgery and microsurgery.
Chad Purnell, M.D., (front right) leads a study on improving sleep apnea diagnostics.
He is collaborating with Georgia Institute of Technology researchers W. Hong Yeo, Ph.D., who conducts research in micro and nano engineering, and May Dongmei Wang, Ph.D., who works in the area of biomedical informatics, using tools to analyze data and train artificial intelligence (AI) software to find patterns.
“We are using at-home sleep studies that use wireless, wearable sensor technology,” said Dr. Purnell. “This allows a child to have a sleep study in their own bed where they are comfortable.”
Using data from sleep studies and computerized tomography (CT) scans, they hope to train AI to be able to predict sleep apnea from a CT scan or even, someday, a picture.
