Solving the Cleft-Palate Puzzle

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t their 20-week ultrasound, Ton Tu and his wife learned their daughter would be born with a cleft lip and palate.  

“Initially, we were shocked,” Tu says.  

The shock quickly turned to practical questions about their baby’s health, appearance and how to care for a newborn with the condition. After the diagnosis in Tallahassee, the Tus were referred to the UF Health Craniofacial Center.  

The center serves as the coordinating hub for Florida’s Cleft and Craniofacial Network, creating a vital safety net for families across the state. This role ensures that world-class cleft and craniofacial care is accessible for every Florida child who needs it, especially those with the most complex cases or who rely on Medicaid. 

A Stalled Puzzle

During pregnancy, the shelves that form the roof of the mouth normally rise and fuse while muscles migrate into place to allow normal speech. If the biological processes at play stall — most often between weeks four and nine — the result can be a cleft lip, a cleft palate or both.   

“Think of a baby’s face as a puzzle,” says Jonathan Sorsok, a pediatric dentistry resident. “Most of the time, the pieces connect perfectly. But if one piece doesn’t fuse, the result is a cleft lip or palate. This small moment in development becomes a lifelong challenge for the child and family, but it is also where our story as clinicians begins.” 

In the first six weeks after birth, residual maternal hormones make newborn cartilage especially flexible, so UF experts can use gentle presurgical guidance to align the lips, gums and nose before surgery.  

When an infant receives this early, pre-surgical care, the benefits are clear: improved feeding, less tension required for the first operative repair and, potentially, a reduced number of future surgeries. 

In Florida, about 1 in every 700 to 1,000 babies are born with a cleft lip, palate or both. That translates into hundreds of new cases statewide each year. 

“These statistics show just how common it is,” says Kaitria Abbatematteo, a UF pediatric dentistry resident. “But behind every number is a real story, a real baby, and a family who needs our help.” 

Many families first learn the news at delivery, as some clefts can be hard to see on a standard ultrasound.  

Sometimes the seam runs through the upper lip and into the gumline, tugging the nose off center and creating a cleft lip. In other cases, the lip looks intact but the roof of the mouth opens into the nasal cavity — known as isolated cleft palate. In both cases, the “puzzle pieces” are present and compatible, but the connection has failed. 

“When we approach this ‘puzzle,’ we first identify the child’s immediate needs,” Sorsok says. 

A Personalized Plan

Care at UF begins with what’s urgent for a newborn: feeding. Unlike a cleft lip alone, a cleft palate prevents an infant from generating the suction necessary to nurse or feed from a standard bottle. Without alternative feeding techniques, there’s a risk of fatigue during feeding or poor weight gain, and milk can flow into the exposed nasal cavity. 

Once an infant is successfully feeding, the pre‑surgical infant orthopedics (PSIO) team maps the child’s craniofacial anatomy in 3D. To build a road map for care, they plan backward from essential long-term outcomes, including clear speech, proper hearing, stable breathing and natural facial growth. 

“It really does take a team,” Sorsok says, acknowledging the interdisciplinary cohort of expert UF clinicians who converge to treat these patients. “Most importantly, we can’t do it without the families and patients, who are true partners in this journey.” 

The treatment journey starts early and runs through adolescence, requiring active parental involvement. 

“This can be a challenge for families,” Abbatematteo says. “It’s a huge time commitment and financial responsibility, especially if they have other children or have to take time away from work.” 

For the Tus, weekly trips to Gainesville were draining but worthwhile. 

“Our daily routines and work schedules were significantly disrupted for nearly eight weeks,” Tu says. “Although this period was demanding, being so involved helped us feel actively engaged in our baby’s care and progress.” 

At their prenatal consult, the PSIO team explained what to expect in the delivery room, feeding intervention options and the plan for the first months of treatment.  

“What stood out most was how genuine and compassionate the doctors, nurses and all support staff were,” Tu says. “They took the time to listen to our concerns, explain everything clearly, and make sure we understood each step. We never felt rushed, and their warmth and reassurance helped us feel supported and more at ease during a very stressful time.” 

Clinicians at the Craniofacial Center have spent decades mastering the facial-cleft puzzle. This depth of knowledge allows them to design a precise, individualized care plan for each patient, built to achieve the best possible long-term outcome.  

“Pre‑surgical infant orthopedics doesn’t always start with advanced technology; often, it starts with tape,” Sorsok says, describing the medical taping used to guide cleft lip segments together.  

By the second week of taping, the Tus saw their daughter’s cleft narrowing, which gave them confidence the process was working.  

“While this journey can feel overwhelming at first, following the doctors’ directions closely and keeping up with scheduled visits truly makes a difference,” Tu says.  

For moderate clefts, families may use DynaCleft, a device they can apply and adjust at home. It’s paired with a small nasal elevator to narrow the lip gap while lifting and shaping the nose. For wider clefts that involve the palate and nose, the team turns to nasoalveolar molding, or NAM — a treatment that uses custom acrylic appliances to encourage the palate to drift into place while helping reshape a flattened nose before the first surgery. 

“NAM is reserved for the most severe cases and provides the best post-surgical outcomes,” Sorsok says.  

Each planned adjustment brings neighboring tissues closer. That helps surgeons join pieces that are already willing to meet, rather than pulling distant segments together under tension. 

“The better you set patients up for success during surgery, the better the outcome,” says Matthew Cooke, UF’s pediatric dentistry program director.    

Decades of Expertise

In the 1970s, UF surgeon Leonard Furlow noticed that many palate surgeries closed gaps but left the key palate muscles in the wrong place. He introduced a zigzag repair that lengthened the palate and moved those muscles back where they could work together. That shift helped many children achieve clearer speech with fewer follow‑up operations. 

Today, the center applies that same logic to presurgical care: recreate, as much as possible, the gentle forces that shape tissues in the womb. 

“NAM fabrication is designed to be safe, reproducible and adaptable to each infant’s anatomy and clinical needs,” Lee says.  

On the first visit, she takes a gentle, fast‑setting impression of the upper jaw while the baby sits upright to protect the airway. Using the mold, she designs a custom plate with a specialized curve at the back to help prevent gagging. 

At each appointment, the team fine‑tunes the appliance, adding or shaving away material to nudge the palate toward the midline. The gap can close by 1 to 2 millimeters per week — a deliberate, steady pace that moves bone safely. 

“When the first NAM is placed, everything needs to fit snugly,” Abbatematteo says. As the segments begin to move closer together, the infant is also growing rapidly. This simultaneous shift in the treated tissue, compounded by the baby’s natural development, means the original appliance needs frequent adjustments to maintain a precise fit. 

The first infants to enter the PSIO program after UF began offering NAM fabrication in 2024 are now recovering from their initial lip and palate repairs. Early observations show reduced cleft width, improved gum alignment and better nasal symmetry before the first lip surgery. As more infants are treated and analyzed, Lee expects the impact to become even clearer.   

But for families like the Tus, the results already reveal the transformative nature of this care. The Tus’ daughter is now healing from her first cleft lip and nose repair surgery. She may need up to three more surgeries, including cleft palate repair, an upper jawbone graft and a final aesthetic correction.  

The most important part of having access to early, specialized care at UF was the long-term impact it had on our baby’s progress and our family’s journey,”
— Ton Tu

After neonatal PSIO, the treatment shifts from molding to repair. Between 3 to 12 months of age, surgeons repair the lip and palate. 

From roughly ages 1 to 7, speech‑language pathologists listen for air escaping through the nose during speech while audiologists track middle‑ear fluid and hearing health. Between ages 6 and 8, orthodontists and pediatric dentists begin the precision planning for a bone graft to stabilize the upper jaw. That procedure provides the necessary foundation for permanent teeth and typically occurs between ages 8 and 10. 

During adolescence, orthodontists and oral and maxillofacial surgeons collaborate to refine facial balance and bite alignment. The final phase of care focuses on restorative and aesthetic precision: A plastic surgeon may perform revisions to the nose and lip for symmetry, while dental specialists address missing teeth to complete a functional smile.   

“It truly requires a whole village to treat these children,” says Cooke.  

By the end of this nearly 20‑year process, most patients have had every major section of the puzzle — lip, palate, teeth, jaw, speech and hearing — adjusted. The craniofacial structures they bring into adulthood function well and no longer show signs of the complex puzzle that was solved. 

“Beyond the clinical benefits, we’re trying to give parents a sense of hope,” Sorsok says.    

Tu’s advice to parents entering the same journey of treatment: Practice patience with your baby and grace with yourself.  

“Progress may feel slow, but with consistency, support and time, it does get better,” Tu says. “Having a coordinated and experienced team gave us clarity, confidence and reassurance during a very overwhelming time.” 

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