Children’s Cleft Palate Team Provides Comprehensive Care

The Children’s Hospital Cleft Lip and Palate Clinic treats children with cleft lip and palate as well as submucous cleft palate, velopharyngeal incompetence and dysfunction, palate trauma and oral-motor coordination problems. This clinic has been providing services in the Rocky Mountain  region since 1970 and has grown to serve more than 300 children annually. 

Cleft Palate Clinic patients benefit from a specialized care team approach, allowing all coordination of the cleft palate child in a single location. This multidisciplinary team includes specialists from:

• Plastic surgery

• Pediatric otolaryngology

• Pediatric dentistry

• Orthodontics

• Speech-language pathology

• Audiology

• Pediatrics

• Occupational therapy

• Genetics

• Nursing

• Social services

The Cleft Palate team also works closely with the child’s primary care physician and local healthcare providers to coordinate the best care possible.

In the United States, cleft lip and/or cleft palate occur in 1 of 700 births and is one of the most common birth defects. It is estimated that 125 babies were born in Colorado with a cleft condition in 2007. Approximately 70 percent of clefts are considered isolated birth defects caused by the combination of several genetic and environmental factors, most of which have yet to be identified. The remaining 30 percent occur as part of a genetic syndrome in which there are other associated anomalies. However, clefts can be hereditary and are more common in certain ethnic groups including Hispanics, Asians and Native Americans.

Today, approximately 30 percent of cleft lips are diagnosed prenatally and this number is expected to continue to increase. For families with this prenatal diagnosis, it is important to provide prenatal counseling. Offered through Children’s Cleft Palate Clinic, prenatal counseling helps families learn what to expect regarding: the newborn period, feeding, psychosocial issues, surgery, speech, hearing concerns and dental issues. These sessions are provided free of charge.

“Prenatal diagnosis has given us a huge advantage, but we have not yet realized the full potential of this benefit,” said Greg Allen, MD, co-medical director of the Cleft Palate Clinic and Pediatric Otolaryngologist at Children’s. “By expansion of our prenatal services, we hope to improve care and ease family stress during the neonatal period.”

In recent years there have been a significant number of families adopting children with cleft lip and palate from other countries, most notably China and Russia . These children may have other concerns including attachment issues, learning English as a second language and gross and fine motor skill delays. We welcome these patients and their families to the Cleft Palate Clinic and tailor their recommendations to make sure they have bonded and adjusted with each other.

What should be done when a baby is born with a cleft?

• First, congratulate the family as they have a new baby!

• Any concerns for upper airway obstruction should be immediately evaluated by an otolaryngologist or other surgeon experienced in neonatal airway management.

• Feeding times should be under 30 minutes, otherwise more calories are being burned in excessive feeding effort than are being absorbed. Feeding issues are assessed and addressed in the Cleft Palate Clinic by the occupational therapist or sooner if warranted.

• For bottle feedings, the Cleft Palate team prefers the Medela^® Haberman Feeder. These infants have trouble with negative pressure suction, and this bottle increases the efficiency of the feeding while decreasing feeding time. 

• Although breast milk is undoubtedly the best source of nutrition for the newborn, few babies with cleft palate are able to feed directly from the breast. However, babies with an isolated cleft lip may be able to breastfeed. A lactation consult with an experienced professional may be warranted to help with breastfeeding and pumping of breast milk concerns.

• These babies often struggle initially to gain weight and need to be closely monitored until the baby is firmly established on the growth curve.

Because significant anxiety often accompanies the birth of a child with a cleft or other craniofacial anomaly, it is important to inform families that there are teams of medical specialists at The Children’s Hospital available to help them. Children’s Cleft Palate Clinic will accommodate newborn visits within two weeks or can help arrange transfer immediately if warranted.

Cleft lip and palate treatment

The Children’s Hospital Cleft Palate team generally recommends repairing a cleft lip when the baby is three to five months old and a cleft palate to be repaired when the baby is nine to 18 months old. The timing of both cleft lip and palate repair is dependent on growth and development. There can be multiple other surgeries for these patients throughout their childhood and completion is usually done around skeletal maturity. 

“One of our core philosophies is to provide a comprehensive care plan that continues to grow and evolve with the growth of the patient,” said Dr. Allen. “The child may continue to receive most care services locally, but we can help provide the roadmap and be there when specialized care is necessary.”

Treatment also involves different medical specialists working together to develop a plan to meet each child’s individual needs. Speech therapy for these children is often recommended to begin after the palate is repaired to help develop speech and language skills. Patients with a cleft palate are frequently monitored for their hearing by an audiologist. These children are have an increased risk for middle ear infections and hearing loss and 90 percent require Pressure Equalization (PE) tube placement. Dental issues include missing or extra teeth in the cleft area. If the alveolar ridge is involved, orthodontic treatment is recommended once the permanent teeth erupt. Occupational therapists work with feeding and breathing issues. The social worker assists the family with psychosocial issues and identifies community resources as needed.

The Cleft Palate team at Children’s welcomes your phone calls for questions and consultations. For more information or to make an appointment, please call (720) 777-2574.