What to Expect from Comprehensive Cleft Care at Arkansas Children’s

A cleft lip or palate can affect more than just how a child looks – it can also impact feeding, speech, hearing and psychological well-being. That’s why Arkansas Children’s uses a team of specialists for cleft treatment that often starts before a child is born and continues into adulthood if needed. “Cleft care is more than just a single event,” says Larry Hartzell, M.D., FAAP, pediatric otolaryngologist, director of the cleft lip and palate program at Arkansas and professor of otolaryngology at the University of Arkansas for Medical Sciences (UAMS). “It’s more than just surgical lip or palate repair.” 

What Do We Mean When We Say, ‘Comprehensive Cleft Care’? 

A newborn with a cleft lip can have trouble clamping onto a nipple or bottle to feed because the lip doesn't fully close. Children with a cleft palate are more prone to ear infections, ear fluid and eardrum problems because the cleft palate can cause abnormalities in the muscles connecting the ears to the throat. A preteen with a visible cleft scar can struggle emotionally because they look different from their peers. Arkansas Children's pediatric specialists provide expert care for each patient's unique needs with a cleft lip or palate.  

Arkansas Children’s cleft care team, approved and supported by the American Cleft Palate Craniofacial Association (ACPA), includes: 

• Audiology 
• Craniofacial plastic surgery 
• Genetics 
• Nursing 
• Nutrition 
• Orthodontics 
• Otolaryngology, head and neck surgery 
• Pediatric dentistry 
• Periodontics 
• Prosthodontics 
• Psychology 
• Social work 
• Speech pathology 

 
One major benefit of having all these specialists in the Arkansas Children's network of hospitals and clinics is that coordinating care is more efficient and effective. Parents and patients receive clear communication about treatment options because our specialists dedicate time to discussing and planning together. 

Cleft Care for Newborns and Infants 

At Arkansas Children's, cleft care can begin before birth, with cleft lips often identified during routine prenatal ultrasounds. Cleft palates are typically identified upon delivery, with treatment beginning early in a child's life. Early identification allows our team to meet with parents and relieve anxieties related to cleft and parenthood. Our team provides resources to new or expectant parents, including specialized feeding bottles that help a newborn with cleft lip or palate get the nutrition they need. 

The entire cleft team is available for every patient as needed. Some specialists play larger roles at different stages of care, depending on the child's development and the type and severity of the cleft. Many times, the cause of a cleft is unknown.  While factors like maternal smoking, alcohol use or a lack of folic acid during pregnancy can increase the risk of a cleft, most cases are caused by a combination of genetic and prenatal influences. In around 25% of children, the cleft is part of a larger health condition or syndrome, such as: 

• Stickler syndrome 
• Velocardiofacial syndrome (VCFS), also known as 22q11.2 deletion syndrome or DiGeorge syndrome 
• Oculo-Auriculo-Vertebral Spectrum, also known as Goldenhar syndrome or hemifacial microsomia 
  
  

Our geneticist tests for different syndromes early in the baby's life, because identifying a syndrome can point to other types of care the baby may need. For example, children with DiGeorge syndrome sometimes have problems with their heart valves, and those with Stickler syndrome can have problems with their eyes. Early identification allows us to alert our pediatric cardiologists or ophthalmologists so they can begin early and optimal care.  

Regardless of whether a syndrome causes the cleft, our nutritionists, speech pathologists and dental specialists play a significant role early in your child’s care to ensure they’re feeding and growing properly. 

Pediatric orthodontists and cleft surgeons carefully monitor your child's dental health and development to determine the ideal time for surgical cleft repair. Arkansas Children's cleft team offers nasoalveolar molding (NAM). This pre-surgical treatment can improve the outcomes of cleft surgeries and reduce the number of surgeries your child will need. The procedure uses a retainer-like device specially fitted to your baby's mouth and nose that slowly reduces the size of the gap. 

When possible, Arkansas Children's pediatric surgeons complete your child's primary cleft surgery before their first birthday. Early surgery improves feeding, facial growth, speech development and outcomes for future cleft-related surgeries. Arkansas Children's has provided cleft care for over 40 years and stays current on the latest procedures, like various bone grafting techniques, speech surgery, including buccal flap surgery and cleft rhinoplasty. 

As part of our recent expansion, we can now offer nearly all cleft-related treatments at ACH in Little Rock and Arkansas Children’s Northwest in Springdale. 

"We have the training, knowledge and experience to offer many different techniques," Dr. Hartzell says. "We tailor the technique to the individual." 

While your child is still an infant, we may begin monitoring speech and sound development regularly. For some patients, this care will be through our Velopharyngeal Insufficiency (VPI) clinic, directed by Adam Johnson, M.D., a pediatric otolaryngologist at Arkansas Children’s and associate professor in the department of otolaryngology at UAMS. Our speech therapists and VPI specialists provide treatment options as needed as your child’s language skills develop. 

Cleft Care for School-Age Children 

"In most cases, at certain stages of development, the child sees the whole team, regardless of what kind of cleft they have," says Dr. Hartzell. "Whether it was an isolated cleft lip or palate, typically they'll see the whole team when they're starting school, around age five, and again, when they're in their mid-teen years." Some patients will see the entire team more often, depending on the complexity of their care and the various issues they may be dealing with. 

As your child becomes more self-aware, our pediatric psychologists and social workers play a more active role in caring for their emotional well-being and mental health. Additionally, many of our parents support one another and their children by participating in an active community online and in person. Once a year, Arkansas Children's hosts Camp Laughter, a free one-day camp for children with cleft or craniofacial differences, at Camp Aldersgate in Little Rock. Many lasting friendships form during this celebration of our patients and their families.