FAQs

Please find below some frequently asked questions about cleft lip and palate. If you do not find the question and answer you are looking for, please contact us.

What is cleft lip and cleft palate?

Cleft lip and/or cleft palate are one of the most common birth defects in the U.S., affecting approximately one in 700 babies. Cleft lip and palate may occur as part of an underlying syndrome or be an isolated birth defect. A cleft lip is the result of the lip not “fusing” together during the first few months of fetal development. This often includes the separation of the upper gum line. A cleft palate, which also occurs during the first few months of fetal development, is a separation in the roof of the mouth caused by the sides of the palate not completely fusing one another.

The severity of cleft lip and cleft palate can vary. A baby can be born with just a cleft lip, just a cleft palate, or both a cleft lip and palate. The clefts are classified as unilateral or bilateral. A unilateral cleft lip or palate affects just one side of the mouth. A bilateral cleft lip or palate affects both sides of the mouth.

Why didn’t our baby’s mouth fully develop?

Cleft lip and palate may occur as part of an underlying syndrome or be an isolated birth defect.

How many babies are born with clefts?

Cleft lip with or without cleft palate is one of the most common birth defects in the U.S., affecting approximately one in 700 babies.

What can be done to help our baby?

Cleft Lip Surgery
The goal of cleft lip surgery is to restore normal appearance and function to the upper lip. Cleft lip surgery is usually performed at three to four months of life. The tissue in the area adjacent to the cleft is rearranged to close the opening. An important part of the surgery involves detaching and repositioning the muscle of the lip to recreate the circular muscle around the mouth.  At the time of lip repair, surgery is also performed to improve the appearance of the nose.

Cleft Palate Surgery
Cleft palate repair is typically performed on infants that are between 9 and 18 months of age. Since the primary goal of repairing the palate is to avoid any abnormal speech development, the surgery is performed before the child develops much speech.

Will our baby have trouble learning to talk?

Typically, babies born with only a cleft lip (without a cleft palate) are not at increased risk for speech problems compared to other children without a cleft. When a baby is born with a cleft palate, there is an increased risk for speech and language difficulties. Because there is an opening in the roof of their mouth (the hard and soft palate), the baby’s early speech sounds and noises may sound “nasal” due to the lack of separation between the mouth and nose. Most babies with a cleft palate will show some early delays in how soon they start to babble or with how many different sounds they say, before palate repair surgery. After palate repair, some babies with cleft palate will begin to “catch up” with their speech, without special instruction. On the other hand, many infants and toddlers with repaired cleft palate will require speech-language therapy to ensure that they make appropriate progress with developing their vocabulary and articulation (pronunciation) skills.

Will our baby be developmentally disabled?

Most children with isolated cleft lip and/or palate will not demonstrate delays in the area of motor and cognitive (problem solving) skills; however, they are at risk for speech-language delays. School age children with repaired cleft lip and/or palate have shown to have an increase in reading and language-based disabilities so close monitoring is recommended. Children born with cleft lip and/or palate as part of a syndrome tend to have a higher risk for developmental delay.

Are there support groups for families with a child born with a cleft?

The Cleft Lip and Palate Center at Nationwide Children's Hospital now has a Family Support Program that includes support group meetings, educational speakers, family social events, and educational materials. Please contact Nancy Neal at (614) 722-6299 for more information or if you are interested in being part of our parent planning committee.

How does the Cleft Lip and Palate Center work with my primary care physician?

It is the responsibility of the managing physician (plastic surgeon) in the Cleft Lip and Palate Center to keep the primary care physician apprised of a patient’s progress. After each team visit a detailed medical report with the plan of treatment is sent to the primary care physician and other medical specialist involved in the child’s care.

How can I get more information?

If you don’t see your specific question here, please contact us.

Can our baby be fed properly?

Infants born with a cleft of the lip seldom have problems feeding. However, infants born with a cleft of the palate most often will require a modification in feeding technique. The cleft in the palate impairs the infant's ability to suck effectively.

There are several bottles and nipples especially designed for infants with clefts. The team nurse will provide information on the types of feeding systems available and provide instructions on their use. There may be a trial and error period with the different feeding systems in order to determine which one the infant will adapt to. Read additional information on feeding.

Breast Feeding: Infants born with a cleft of the lip usually can breast feed without difficulty. However, infants born with a cleft palate usually have difficulty in creating enough suction to effectively breast feed. Infants can still benefit from breast milk by having mom pump her breast and transfer the milk into the special feeding bottle. Lactation Specialists are available for consultation.