Cleft Lip and Cleft Palate

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.

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.

One out of every 700 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.

Cleft lip used to be referred to as a hare lip because it was thought the upper lip looked like a rabbit's lip. The term hare lip should not be used. The defect should be referred to as cleft lip.

What is the cause?

At one time people thought that if a pregnant woman had bad or frightening thoughts, or if she encountered gypsies or a fish with a gaping mouth, she would have a baby with a cleft. We now know these stories are not true.

There is no single cause for cleft lip or cleft palate. A cleft can occur without a known reason. Sometimes factors such as disease, drugs, and alcohol can act on the developing fetus and result in a cleft.

Heredity can play a role in causing clefts. If either parent has a cleft, the chances increase that the baby will have a cleft. If both parents are normal and have a baby with a cleft, the chances that they will have another baby with a cleft increase.

Many children with clefts have other problems and 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. 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 do clefts affect a baby's face?

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 be involved, 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.

How is it treated?

You probably have many questions about what can be done for your baby. The best approach for the treatment of your baby is a team approach. A team of professionals including doctors, speech therapists, audiologists, psychologists, and others will help take care of your baby.

You probably met your pediatrician and surgeon while your baby was in the newborn nursery. Your pediatrician will provide you with general pediatric care and coordinate all the services that your baby may need. The surgeon may have been able to stitch your baby's lip before sending the baby home with you. If your baby has a cleft palate, it may be surgically repaired at a later date, depending on the judgment of your surgeon.

Another doctor needed in the evaluation, treatment, and follow-up of your baby is an ear, nose, and throat specialist (otolaryngologist). Babies with cleft lip and cleft palate usually have middle ear problems, which cause fluid buildup in the middle ear.

Your baby's teeth can be affected if the cleft is in the gum. Dentists, specifically an orthodontist and a prosthodontist, may need to evaluate and monitor your baby's tooth development.

There are many special problems related to cleft lip and cleft palate that may require attention:

1. Problems with feeding

   Often a parent's first concern is, "How will I feed my baby with a cleft lip and palate?" For example, the cleft can make effective sucking difficult and the milk may come back through the baby's nose. However, your baby will thrive when you learn to feed her effectively. A speech and feeding therapist can help you. You will be taught ways to feed your baby, such as holding her in an upright position, giving small amounts of milk, and using a syringe or a nipple with a large hole.

2. Problems with 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 baby to make because air leaks through the nose. Therefore, your baby needs to be under close supervision of a speech and language therapist.

3. Problems with 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 monitor your child's hearing closely because frequent ear infections may lead to hearing loss.

Resources

You may wonder where you can find a team of professionals for your baby. Your pediatrician is the best resource. 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 may obtain more information about these centers and additional information on cleft lip and cleft palate 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