What is a cleft lip or palate?

The term "cleft" refers to an opening. An opening in the lip is called cleft lip. An opening in the roof of the mouth (palate) is called cleft palate. There may be a cleft on one side of the upper lip or on both sides. The split usually occurs only on the lip, but at times it may extend up into the nose as well. In the case of a cleft palate, the soft part of the palate at the back of the mouth may have an opening, or the cleft may extend forward to the bony part of the palate called the hard palate. A baby may have a cleft lip or a cleft palate or both.

One out of every 800 babies has some form of cleft lip or cleft palate. Up to 5,000 babies are born with a cleft lip or palate in the United States each year.

What is the cause?

The separate parts that form a baby's face and palate come together during early pregnancy. A cleft occurs if the parts do not fuse completely. There is no single cause for cleft lip or cleft palate. A cleft can occur without a known reason. Sometimes it can occur if the mother had a disease or abused drugs or alcohol while she was pregnant.

Clefts can sometimes run in families. If either parent has a cleft, there is a greater chance that the baby will have a cleft. If you have a child with a cleft, the chance of your next child having a cleft is even greater (even if both parents have no cleft).

Many children with clefts have other problems and birth defects as well. They may grow more slowly or have learning difficulties. Sometimes clefts are associated with hereditary diseases that the family may be unaware of. Genetic tests can identify genes in some children that are responsible for clefting. There are some genetic tests that can identify several genes that cause clefting. Therefore, it is very important for your baby and you to see a specialist in genetics (a geneticist). The geneticist can help explain the cause of the cleft lip or palate and determine your chances of having another baby with a cleft.

How is it treated?

Surgery is usually done during the first 12 to 18 months to repair a cleft lip or cleft palate. A team of health care professionals will also help take care of your child's hearing, speech, nutrition, teeth, and development.

• Surgery

  Surgery to repair a cleft lip may be done at around 3 months of age. Surgery to repair a cleft palate is often done at about 12 months of age.

• Feeding

  The cleft can make sucking difficult and the milk may come back through the baby's nose. Your health care provider will teach you how to feed your baby. These techniques might include holding your baby in an upright position and using a special bottle for feeding.

• Teeth

  Your baby's teeth will be affected if the cleft is in the gum or the hard palate. Dental specialists will probably need to check your baby's tooth development as your child grows.

• Speech

  Difficulties in speech may occur for many reasons. The quality of speech is often nasal and certain consonant sounds may be difficult for your child to make because air leaks through the nose. A speech and language therapist can help your child with speech.

• Hearing

  Your baby may have many more ear infections than a baby without a cleft. Difficulties in swallowing affect air pressure in the middle ear and spread infection through the nose to the ears. An audiologist and an ear, nose, and throat specialist will need to check your child's hearing often because frequent ear infections may lead to hearing loss.

Where can I get more information?

Talk to your child's health care provider to help find specialists and other resources. There are many treatment centers for cleft lip and cleft palate throughout the United States and Canada. They are referred to by many different names, such as cleft treatment centers, congenital defect clinics, or craniofacial clinics. You can get more information by contacting one of the organizations listed below.

The American Cleft Palate Educational Foundation
331 Salk Hall
University of Pittsburgh
Pittsburgh, PA 15261

FACES: The National Craniofacial Association
National Association for the Craniofacially Handicapped
P.O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
http://www.faces-cranio.org

Hemifacial Microsomia/Goldenhar Syndrome Research and Information
P.O. Box 61643
St. Petersburg, FL 33714
(813) 522-5772

Cleft Palate Foundation
104 Estes Drive, Ste. 204
Chapel Hill, NC 27514
(800) 242-5338
http://www.cleftline.org

Children's Craniofacial Association
PO Box 280297
Dallas, TX 75228
(972) 240-7760 or (800) 535-3643
http://www.ccakids.com

National Foundation for Facial Reconstruction
317 East 34th Street, Rm. 901
New York, NY 10016
(212) 263-6656

American Speech-Language-Hearing Association
10801 Rockville Pike
Rockville, MD 20852
(301) 897-5700
http://www.asha.org