Cleft and Craniofacial Program

From cleft lip and cleft palate repair to complete facial reconstruction, CHOC Children’s uses the very latest and advanced techniques to help a child with a craniofacial disorder look, eat and speak just like other children. The American Cleft Palate-Craniofacial Association has endorsed CHOC as an official Cleft and Craniofacial Team, meaning our program has met specific guidelines for working as an interdisciplinary team.

Since growth is a significant factor in the ultimate outcome of treatment, children are assessed thoroughly and regularly by the team until young adulthood. Our goal is to ensure the best possible outcome for children born with clefts or other craniofacial birth defects.

Choosing a Craniofacial Team

Many health centers across the country are qualified to treat cleft and craniofacial disorders, but not all offer a multidisciplinary team that can care for the variety of related issues that can occur. At CHOC, we not only have a uniquely comprehensive team, we also offer easy coordination with every specialist including scheduling, communication and follow-up treatments. We always work closely with families to carry out a plan that is sensitive to a child’s needs.

Our multidisciplinary team includes:

•    Geneticists
•    Plastic surgeons
•    Neurosurgeons
•    Otolaryngologists (Ear, Nose and Throat)
•    Orthodontists
•    Pediatric dentists
•    Audiologists
•    Ophthalmologists
•    Speech and language therapists
•    Pediatricians
•    Genetic counselors
•    Psychologists
•    Nurses
•    Social workers

At the close of every team clinic session, the entire craniofacial team gathers to discuss each patient and aspect of his or her treatment. From there, our program coordinator maps out a plan for families and stays in close communication to ensure a seamless experience from start to finish. Our program coordinator serves as a point of contact to answer any questions and acts as an advocate for families along the way.

Genetic Syndrome Causes Cleft Lip, Palate in Sisters

Just like most sisters, Tristyn and Raigyn Snyder will share toys, clothes and friends throughout their lives. They also share something unique: a genetic condition called Van der Woude syndrome. VWS is the most common single-cause of cleft lip and palate.

Snyder family

Frequently Asked Questions about Cleft Lip and Palate

Cleft lip is a birth abnormality of the nose and lip. Cleft palate is a birth abnormality of the roof of the mouth (palate). A child can have cleft lip, cleft palate or both. They occur early in pregnancy when the sides of the lip and/or the roof of the mouth do not fuse together as they should. Most babies born with a cleft are otherwise healthy with no other birth abnormalities. In some cases, other family members have also had a cleft lip/palate.

Cleft lip is an abnormality in which the lip does not completely form during development. It often affects the nose, as well. The degree of the cleft lip can vary greatly, from mild (notching of the lip) to severe (opening from the lip up through the nose). It can affect one side of the lip or both sides.

Cleft palate occurs when the roof of the mouth does not completely close, leaving an opening that can extend into the nasal cavity. The cleft may involve either or both sides of the palate. It can extend from the front of the mouth (hard palate) to the throat (soft palate). Often the cleft will also include the lip. Cleft palate is not as noticeable as cleft lip because it is inside the mouth, but it affects the baby’s ability to nurse.
Beyond the cosmetic abnormality, there are other possible complications that may be associated with cleft lip and cleft palate, including: • Feeding difficulties. Most babies with only a cleft lip are able to nurse. Babies with a cleft palate, however, are unable to suck properly because the roof of the mouth is open. Learn tips for feeding your baby with a cleft palate.

• Ear infections and hearing loss. Ear infections are often due to a dysfunction of the tube that connects the middle ear and the throat. Recurrent infections can then lead to hearing loss. This is treated by placing tubes in the ear, which is a very straightforward and effective treatment. Learn more about ear tubes.

• Speech and language delay. Due to the opening of the roof of the mouth, muscle function may be affected, which can lead to a delay in speech or abnormal speech. Talk to your child’s doctor about a referral to our speech therapy program.

• Dental problems. As a result of the abnormalities, teeth may not develop normally and orthodontic treatment is usually required. Sometimes surgery is required, as well.
Parents can take comfort in the sophisticated surgical techniques that help restore the balance and function of this area. With treatment, your child’s cleft lip or cleft palate can be repaired. Your child can look, eat and speak just like other children. This will all be possible through our craniofacial multidisciplinary team that will work with you and your child to develop and carry out a treatment plan.

Treatment requires the skills of many different specialists. We offer a multidisciplinary team to meet your child’s needs including ENT specialists, plastic surgeons, speech pathologists and audiologists.

For most infants with cleft lip alone, the abnormality can be surgically repaired within the first several months of life (usually when the baby is 3 to 6 months old). This will be decided by your child’s surgeon. The goal of this surgery is to fix the separation of the lip.

Cleft palate repairs are usually done between the ages of 9 to 12 months. The exact timing of the surgery will be decided by your child’s doctor. The goal of this surgery is to fix the roof of the mouth so that your child can eat and learn to talk normally.
The most immediate concern for a baby with cleft palate is good nutrition. Sucking for children with a cleft palate is difficult because of the poorly formed roof of the mouth. Children with just a cleft lip (without a cleft palate) do not routinely have feeding difficulties. The following are suggestions to help aid in the feeding of your infant:

• It is rare that a baby with a cleft palate will be able to attain adequate nutrition through breastfeeding alone. Breast pumping and then using a bottle with a special nipple is the recommended technique.

• Hold your infant in an upright position to help keep the food from coming out of the nose. Burp your baby frequently since babies with a cleft palate tend to swallow a lot of air.

• Small, frequent feedings are recommended. This can be a frustrating and slow process; however, your infant will receive more calories, and therefore, gain weight.

• There are many types of bottles and nipples that can assist with feeding an infant with cleft palate. In some cases, supplements may need to be added to breast milk or formula to help your infant meet his or her calorie needs. We can assist you in deciding which nipple and supplement is most appropriate for your child.

What Parents Need to Know about Cleft Palate Repair

Cleft lip and cleft palate are craniofacial anomalies of the mouth and lip that occur early in utero when the sides of the lip and the roof of the mouth do not fuse together as they should. A child can have cleft lip or a cleft palate, or both. A cleft palate leaves an opening in the mouth that also affects the normal positioning of the muscles that we use for speech and swallowing.

Resources for Families

Letter to the Parent of a Child with a Cleft

Choosing a Cleft Palate or Craniofacial Team

Preparing Your Child for Social Situations

Downloadable Booklets for Parents

Contact Us

The CHOC Children’s Craniofacial Clinic is located inside the CHOC Clinic building on our main campus.

1201 W. La Veta Ave.
Orange, CA 92868

For more information about the CHOC Children’s Cleft and Craniofacial Program or to refer a patient, please contact Program Coordinator Sharon Vargas at (714) 509-8378.

Facebook  Twitter  Pinterest  Instagram  Foursquare
 LinkedIn  YouTube  RSS  CHOC Blog


UC Irvine

CHOC Children's is affiliated with the UC Irvine School of Medicine