Restoring smiles, transforming lives through cleft lip and palate care

A cleft lip or cleft palate, also known as an orofacial cleft, is one of the most common birth defects or malformations. It occurs when a baby’s lip or mouth doesn’t form as expected. In the U.S., one in 1,050 babies is born with a cleft lip, with or without a cleft palate, and one in 1,600 babies is born with just a cleft palate. In total, all orofacial clefts occur in around one in 700 live births.

Children born with these conditions may face challenges like feeding difficulties, ear infections, hearing loss, speech and language delays, dental issues and poor growth. Without proper correction, clefts can also impact self-esteem. But thanks to modern medical advances, there is hope. “Today’s medical advancements and support systems give these children incredible opportunities to thrive and lead confident, healthy lives,” says Dr. Michael Neumeister, chair of SIU Medicine’s Department of Surgery and a specialist in plastic surgery.

Risk factors for orofacial clefts

A recent study at the University of Iowa identified three genes that can lead to cleft lip or palate when missing from a baby’s genetic makeup. This is a big step to understanding why cleft conditions occur and could help pave the way to preventing them.

While genetics plays a role in orofacial clefts, certain factors during pregnancy can increase the risk. These include smoking, pre-existing Type 1 or 2 diabetes, using certain epilepsy medications and not getting enough vitamins.  Prenatal vitamins taken before and during pregnancy are helpful.  Orofacial clefts are more common among Asians and certain Native American tribes compared to Caucasians and African Americans.

There is wide variability in the amount of cleft that can occur. As a result of timing during development, a cleft lip may also have a cleft palate or may not. The reverse is true as well.

• Cleft lip: The lips form between the fourth and seventh week of pregnancy. A cleft lip happens if the upper lip tissue doesn’t join completely before birth. The resulting opening may be small or extend through the lip into the nose. A cleft lip can occur on one or both sides or in the middle of the lip. Babies with a cleft lip can also have a cleft palate.
• Cleft palate: The roof of the mouth forms between the sixth and ninth weeks of pregnancy. A cleft palate results when the tissue that makes up the plate doesn’t completely join. Some babies have both the front and back parts of the palate, while others have only a partial opening.

Orofacial cleft treatment 

In many cases, an ultrasound can detect a cleft lip before birth, allowing parents to prepare for their baby’s treatment journey. Cleft palate can occasionally be found; however, it is more difficult to detect. The primary treatment for both conditions is surgical repair.

“Learning that your baby may need surgery can feel overwhelming, but it’s important to know that these procedures are highly effective,” says Dr. Matthew Johnson, who specializes in facial plastic and reconstructive surgery. “Treatment has been refined over years and continues to improve regularly. Cleft lip and palate surgeries not only improve a child’s appearance but also restore critical functions like feeding, speech and hearing.”

• Cleft lip surgery: This procedure is recommended when baby is between three and six months old. Surgery helps restore function to the lips and mouth and creates a more natural appearance, structure and function. If nasal repair is needed, it is performed at the same time.
• Cleft palate surgery: This procedure is recommended when baby is between nine and 18 months old. Surgery closes the separation in the palate and rebuilds the roof of the mouth. To reduce the risk of fluid buildup, the surgeon often places ear tubes during the procedure.

For children with severe clefts, orthodontic treatment may be used before any surgery is performed. This is called presurgical nasoalveolar molding, PNAM or NAM. It is a specialized mold made by an orthodontist. The SIU Medicine cleft and craniofacial team works closely with parents prenatally and shortly after birth to develop a personalized treatment plan.

Additional treatments 

For many children, initial surgeries are just the beginning of their journey. Approximately 75% to 80% of patients require two or three surgeries during childhood and adolescence. These may include bone grafting to support the dental arch, jaw alignment surgery,  rhinoplasty, and soft tissue revisions to improve aesthetics and function.

• Ear and hearing treatment: Babies with orofacial clefts often struggle with ear infections and hearing issues. About 50% to 70% experience hearing challenges, primarily due to anatomical differences in the ears' structure and muscles. Around 90% of patients born with clefts require ear tubes. With proper medical care, most children can achieve normal hearing.
• Speech therapy: Because of the structural differences of the palate and possible hearing challenges, about 80% of children require speech therapy, which usually starts between the ages of two and five. Speech therapy targets nasal-sounding speech, difficulty pronouncing certain sounds and compensatory speech patterns. With therapy, most children can achieve clear speech. During infancy, patients with a cleft lip may have challenges latching during feeding. When a cleft palate is present, it can be difficult to generate suction to feed. A speech therapist can also help develop a feeding plan.
• Dental care: Orofacial cleft issues can lead to later dental problems with jaw alignment, misaligned or missing teeth and gum issues. It’s important to see a dentist early and continue regular visits to monitor for any issues through childhood. Regular dental care at home throughout childhood establishes a foundation for good dental health.
• Physical therapy: As a child grows, they might also need physical therapy to assist and support the challenges of their medical condition.
• Psychology and social therapy: Being born with a facial difference also impacts psychological and social development. It is important for patients who are born with these conditions to be evaluated regularly for conditions such as depression so they can receive needed support.  

The foundation of care for patients with cleft and craniofacial conditions is multi-disciplinary care. The American Cleft Palate – Craniofacial Association (ACPA) sets standards for quality in patient care. SIU Medicine has a multi-disciplinary cleft and craniofacial team lead by Drs. Michael Neumeister and Matthew Johnson. Our clinic meets and exceeds ACPA standards providing holistic care of patients with facial differences. This complex care involves many specialties available at SIU: cleft surgeons, craniofacial surgeon, oral surgeon, orthodontist, otolaryngologist, speech therapist, audiologist, social work, developmental psychologist, pediatric ophthalmology, pediatric neurosurgery, radiology and more. Our team nurse coordinator facilitates the management of this complex care.

Raising a child born with a cleft lip or palate can be a challenging journey, but you don’t have to navigate it alone. The SIU Cleft and Craniofacial Clinic is here to provide expert care, coordinate treatments, support your family every step of the way. Together, we can help your child thrive and achieve their brightest smile.