Miracle Monday: Cleft lip care grows for the Spokane community

SPOKANE, Wash.- Kids born with cleft lips will inevitably have multiple surgeries in their first 18 years of life. It’s those who are connected to a team of specialists for treatment throughout that time period that has the best outcomes. As of recently, Spokane will be offering that on an even greater scale than previously.

“I felt so lost. I felt scared, I felt alone, because I had never met anyone who had gone through something like this” said Christina Allen, whose son was born with a cleft lip. About halfway through her second pregnancy, Christina Allen found out her little boy had a cleft lip. She explained, “Frightening, scary, the unknown, you don’t know. My entire pregnancy, I was just thinking, ‘What is he going to look like? How severe is this? What is his journey going to be?'”

The entire team at Sacred Heart was there to help her each step of the way. Allen said, “They’re all so knowledgable, caring, they know what they’re doing, they know what they’re talking about, and they really just provide that peace of mind for parents that are going through something like this.” Cameron’s treatment will continue for years, and that support will only grow.

These specialized teams include primary care doctors, social work, orthodontics, dentistry, audiology & ENT. That team follows their patient from the time of identification of the cleft through adulthood when their treatment typically concludes. Thanks to one local surgeon pushing for change and improvement, Spokane can now offer just that to families of those born with a cleft lip.

Dr. Gailey, the surgical lead for the Spokane Maxillofacial Cleft team, told us the team itself had operated for several years, but with nurse coordinators. The providers were volunteers and varied between multiple clinic appointments. As a result, there was a lack of continuity in the recommendations made by the team. Additionally, not all providers were formally trained in cleft reconstruction/treatment. This was beneficial to families, but not ideal.

Dr. Gailey explained, the new structure continues to have a nurse coordinator to manage the kid’s progress but also has a formal Surgical lead, Orthodontic Lead, Speech-Language Pathology Lead, and Medical Lead. Now, that entire team sees the patients and each and every visit. The new organizational structure of the team adds continuity and as a result, better outcomes with a more predictable end result.

Dr. Gailey adds, there are still providers from ENT, dentistry, genetics, audiology, and other specialties that attend the clinic, but the core leads direct the care.

Dr. Gailey is the surgical lead for the Spokane Maxillofacial Cleft team that was just assumed by the Providence Children’s Hospital. That team consists of dentists, orthodontists, speech pathologists, and medical doctors that all work together to get these kids to a functional outcome. Dr. Gailey explained, “The cleft team helps the parents navigate some of the hurdles they may not even know exist.”

The care is complex, from therapists to surgeons. This team concept simplifies the process by bringing the patient to a centralized location, with all the specialists they need in one commonplace. Dr. Gailey explained, “The parents almost have a roadmap. Okay, this is the next step that I should be looking for. How do I prepare myself, my family, and my child to get to that next step?”

The proper sequencing of treatment and evaluations is crucial to the success of a child’s medical, developmental, and emotional needs. With Sacred Heart Children’s Hospital cleft team, children can stay close to home for high-quality, consistent care. Rather than patients having to go to a variety of different appointments, parents can bring their child to an entire team in one centralized location.

Dr. Gailey said that several studies show the benefits of cleft results for patients who have this kind of team care. “What it really does is brings us to the standard of the rest of the nation, where we’re able to offer the surgical & medical treatments for these kids.”

Cameron has been through a lot of treatment, and two surgeries, so far. He’s doing so well, his mom said that most people would never know the struggles he’s gone through, or the road he’ll have ahead. With access to providers who care, they know they can overcome the challenges that lay ahead.

Donations made to Children’s Miracle Network help fund new programs and services just like this one.

Editor’s Note: This article has been updated to reflect additional information on the pre-existing Maxillofacial Program. 

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