Family: Education: Descriptions of Disorders
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CLEFT LIP AND CLEFT PALATE
CLEFT LIP AND CLEFT PALATE
What Are Cleft Lip and Cleft Palate?
Each year in the United States, more than 5,000 newborns—about 1 out of every
700 births—are born with cleft lip with or without cleft palate (CLP). A cleft
lip is a hole or gap in the upper lip. Cleft lip may occur either alone
or with a cleft palate, which is an opening in the roof of the mouth.
CLP occurs when certain parts of the face do not form properly as the fetus
is growing inside the mother’s uterus. Cleft lip, with or without a cleft palate,
is more common in boys, while cleft palate alone occurs more often in girls.
It also occurs more often among American Indians and Asians, and less often
among blacks, than it does among whites.
What Causes CLP?
The lips and palate are formed between the fifth and eighth weeks of pregnancy.
During this time, certain tissues of the head and face begin to come together
to form the main part of the nose, the nostrils, the lips, and the cheeks. Normally,
the left and right parts of the lips fuse to form the two vertical ridges on
the upper lip. At the same time, the left and right parts of the palate fuse,
forming the roof of the mouth. The palate is divided into the hard palate,
which is the frontmost, hard portion of the roof of the mouth, and the soft
palate, the softer area of tissue that lies behind it.
Sometimes the tissues of the lips do not fuse normally, and a cleft lip is
the result. When this happens, the tissues that form the very front of the palate
may be out of position and be unable to come together with the soft palate to
form an intact roof of the mouth. A gap is then left in the front of the palate
or in the gumline. Sometimes this gap extends backward into the hard palate,
forming a cleft palate.
A cleft lip may be incomplete, consisting of just a notch in the upper
lip, or complete, when the gap extends upward into the nostril. In about
80% of cases, the cleft occurs on only one side of the lip and is unilateral.
In the remaining cases, the cleft occurs on both sides and is bilateral.
Like cleft lip, cleft palate may be either complete or incomplete. In a complete
cleft palate, the opening extends from the hard palate in the front of the mouth
back to the soft palate. There is now an open connection
between the oral cavity (mouth) and the nasal cavities,
which lie just above the roof of the mouth. An incomplete cleft is a gap in
the front part of the roof of the mouth, usually running from the upper gums
to the area just behind it. An incomplete cleft in the palate may also connect
to the nasal cavities.
CLP is usually caused by a combination of environmental and genetic (inherited)
factors. There are some substances (such as alcohol) and medications (such as
anti-seizure medicines) which may increase the risk of an oral cleft to the
baby if taken during pregnancy. Most commonly, however, clefting is not due
to anything that the mother has done or not done during the pregnancy. Most
often, CLP occurs in babies without any other birth defects and is due to a
developmental abnormality that occurs during the very early stages of fetal
development.
Less often, some conditions that run in families make it more likely that a
child will be born with CLP. One such condition is Van der Woude syndrome. This
is an inherited condition that is passed on from parents to their offspring.
In Van der Woude syndrome, the mouth and lips are malformed at birth.
Can CLP Be Treated?
Surgery is needed to repair cleft lip and cleft palate. The timing of surgery
varies; some surgeons will do the operation in the newborn period, while others
feel it is better to wait until the child is several weeks to months of age. Usually only one operation is required for a cleft lip, but in some cases
a second procedure may be needed to improve the appearance of the scar.
A cleft palate is usually repaired when the child is several months to one
year old and it may, in some cases, require more than one operation. A team
of specialists is used to provide the many types of treatment that will be needed.
This team includes cosmetic surgeons, dentists and orthodontists, speech therapists,
and ear-nose-throat specialists.
What About the Future?
The risks that CLP will occur in the child of a future pregnancy depend on
a number of factors. These include the type of clefting that has occurred, whether
there is clefting in other family members, and the presence of certain inherited
conditions in your family.
In most cases, the risk of having another child with CLP ranges from 3–5%.
This same level of risk applies to your child’s future offspring as well. On
the other hand, a parent with Van der Woude syndrome has a 50% chance of having
a child with CLP. The risk for any individual is best determined by a consultation
with a geneticist.
Finding Information
OMIM
225000
Genetest
- PVRL1 gene 600644
Finding Support
Be sure to talk to your doctor about any questions you may have about your
child’s condition. There are also many resources to help you understand CLP:
Cleft Palate Foundation
104 South Estes Drive, Suite 204
Chapel Hill, NC 27514
(919) 933-9044
CLEFTLINE 1-800-242-5338
Fax: (919) 933-9604
E-mail: info@cleftline.org
Web site: www.cleftline.org
Prescription Parents (for parents of children with cleft lip and palate)
22 Ingersoll Road
Wellesley, MA 02181
(617) 965-2946
Web site: www.samizdat.com/pp1.html
For more information about cleft lip/palate, you can also call 1-800-24-CLEFT.
Author: Deborah J. Shuman
Date: April 20, 2000
Disclaimer: Links to support groups and relevant web sites do not signify
an endorsement.
© 2000 The Johns Hopkins University
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Last Updated:
12/16/03
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