Cleft palate is a treatable birth defect in which the baby's roof
of the mouth (palate) does not develop normally during pregnancy, leaving an
opening (cleft) that may go through to the nasal cavity. Cleft palate may
involve any part of the palate, including the front part of the roof of the
mouth (hard palate) or the small tag of tissue that hangs down from the soft
palate (uvula). It may also occur by itself or along with
other birth defects of the face and skull, particularly
cleft lip.
Cleft palate and cleft lip are the most common congenital defects
of the head and neck.1 Until treated surgically, cleft
palate can interfere with feeding, speech development, and hearing.
Cleft palate may be caused by genetic and environmental factors,
although the exact relationships are not clearly understood. If you were born
with a cleft palate, your children will have an increased risk for the
defect.
A baby may be at higher risk for being born with cleft palate if
during pregnancy the mother uses certain medicines, is exposed to radiation or
infections, takes illegal drugs, smokes, or drinks alcohol.
What are the symptoms?
Some forms of cleft palate are obvious at birth because they
produce distinctive facial deformities. But the way a newborn's face looks does
not always indicate the seriousness of the condition. The most reliable
indicator of severity is the location of the cleft. For example, a nonvisible
small cleft in the soft palate may have greater long-term impact-because of its
effect on speech-than a visible large cleft.
Babies with cleft palate generally have feeding problems because
they are not able to suck and swallow normally.
How is cleft palate diagnosed?
Cleft palate is diagnosed by a physical exam shortly after birth.
Fetal ultrasound can sometimes detect cleft palate as
early as 14 to 16 weeks of gestation, especially if it is severe and occurs
along with a cleft lip. But fetal ultrasound is not reliable for this
purpose.
How is it treated?
Treatment for cleft palate usually involves a team of doctors and
other health professionals. A doctor or nurse can guide you on how to feed and
care for your baby.
Surgery is done to correct the defect, usually when your child is
between 12 months and 18 months of age. More than one procedure is often
needed. Surgical corrections specifically for cleft palate usually are
completed by your child's teen years.
Some children with cleft palate develop problems that require
special treatment, such as speech and hearing difficulties, sinus and ear
infections, or complications following surgery to correct cleft palate. Dental
problems sometimes also occur, such as having extra, misshapen, or missing
teeth.
The symptoms of
cleft palate vary depending on the location of the
cleft and whether other facial defects are present. Babies born with cleft
palate often have feeding difficulties, because the condition interferes with
normal sucking and swallowing. If your baby also has
cleft lip, it may be obvious at birth. Even if the
defect does not affect facial appearance, it is usually easily seen inside the
mouth.
The following table illustrates the common symptoms related to
cleft location.
Children with cleft palate may also have large
tonsils and adenoids. Most health professionals agree
that these structures should not be removed. They may help children with cleft
palate to speak more clearly by allowing higher pressure to build up in their
mouths during speech.
Certain
health and social problems, especially speech,
hearing, and dental problems, are more common in children born with cleft
palate.
Cleft palate is sometimes a symptom of another health condition,
such as
fetal alcohol syndrome. For this reason, it is
important for children with cleft palate to be evaluated for other conditions
beginning at birth, especially if other symptoms are present, such as other
facial deformities or
learning disabilities.
Exams and Tests
A diagnosis of
cleft palate is based on a
physical exam of the baby's mouth at birth. If your
newborn is diagnosed with cleft palate, he or she will likely also be examined
for other birth defects, such as a small jaw. Also, a cleft in the
uvula can be mistaken for a cleft of the soft
palate.
Although rare, cleft palate is sometimes a symptom of another
health condition, such as
fetal alcohol syndrome. For this reason, it is
important for children to be evaluated for other conditions beginning at birth,
especially if other symptoms are present, such as other facial deformities or
learning disabilities.
Some children with cleft palate may need testing for complications,
such as speech and hearing problems, throughout their lives.
Early detection
Fetal ultrasound can sometimes detect cleft palate as
early as 14 to 16 weeks of gestation, especially if it is severe and occurs
along with a
cleft lip. But fetal ultrasound is not reliable for
this purpose. For more information on this test, see the topic
Fetal Ultrasound.
Sometimes an inherited disease or condition causes a number of
defects including cleft palate. If you have had a fetal ultrasound that shows
your
fetus is likely to have cleft palate and other
defects, you may decide to have genetic counseling along with
amniocentesis or
karyotype testing. These tests and genetic counseling
can help you learn whether your fetus is likely to have a condition caused by
chromosomes that aren't normal. Karyotype testing can
also be done after your baby is born.
Treatment Overview
Surgery is the primary treatment for
cleft palate. Sometimes multiple procedures are needed
over several years to fully correct the defect. Additional treatments depend on
the severity of cleft palate and whether other problems develop, such as speech
or feeding problems. Some treatments, such as speech therapy, may continue into
early adulthood.
Before surgery
Before surgery to correct a cleft palate, your baby may need
treatment:
For breathing difficulties. Some babies born
with cleft palate have obstructed airways. Treatment depends on the severity of
the problem. For example, some babies can be given oxygen through a tube in the
nostrils. In rare cases, emergency measures are needed, such as a
tracheostomy.
For feeding difficulties.
Babies with cleft palate usually have difficulty sucking and swallowing. A
doctor or nurse can guide you on
feeding techniques. Also, your baby will be closely
monitored for signs of
dehydration.
To prepare the mouth for the
surgery. Dental supports may be used immediately after birth or within the
first 2 to 3 weeks of birth. These supports are made from plastic or metal
molds (sometimes called a baby plate or obturator) to help reshape the tissues.
Surgical repair of cleft palate
Generally, surgery is performed between ages 12 months and 18
months to promote normal speech and language development.2 Before age 6 months, surgical repair of cleft palate may
cause problems with normal facial growth. In some situations, doctors may
prefer to wait until the baby is 18 months of age, to avoid damaging the teeth
buds or for other reasons related to your child's circumstances. Surgery to
correct a cleft of the soft palate may be done earlier than surgery to correct
a cleft of the hard palate. See a picture
comparing a normal mouth and two types of cleft palate.
Additional surgeries may be needed as your baby grows and
develops. The number and type of surgeries depend on how much of the palate is
affected and other aspects of your baby's health, such as whether another
facial defect or health condition is present. For example:
A baby with a cleft of the soft palate may
need only one surgery, which usually is done between the ages of 1 and 2. It
sometimes is postponed until the child is between ages 5 and 7
years.
A baby with a cleft that involves both the hard and soft
palates may need several surgeries, beginning at birth and continuing until he
or she is between 10 and 13 years of age.
A baby who has cleft
palate and other facial birth defects, including cleft lip, may need several
surgeries, may have more complications, and may need additional
treatment.
After surgery
After surgery to correct cleft palate, antibiotics are usually
given for about 5 days.
Your baby's arm movements may be restricted with splints or other
material for as long as 3 weeks. This measure is sometimes needed to prevent
your baby from touching and damaging the stitches.
Babies with cleft palate have problems sucking and swallowing, so
feeding can be challenging. Watch for
signs of dehydration, which can develop if your baby is not getting enough
breast milk or formula. Bottle-feeding is usually more successful than
breast-feeding. Some mothers bottle-feed pumped breast milk. After surgery to
repair a cleft palate, sucking often feels different to babies, and they must
relearn proper techniques. During the adjustment period, your health
professional can recommend strategies to help you make sure your baby gets
enough nourishment.
Although surgery often leaves slight scars, usually the palate
heals well after surgery, with very little evidence of the cleft. A child's
facial bones typically grow normally, and the child speaks more clearly.
Other surgeries may be needed to correct the scars.
Additional treatment for speech, teeth, and hearing
loss, and emotional counseling may also be needed. Some children need to have
ear tubes inserted surgically to help prevent ear
infections.
Speech therapy may be needed as your baby grows and begins to
talk. Speech therapy may continue through childhood. If additional surgeries
are performed when your child is older, speech therapy may be reintroduced or
adapted to meet new challenges.
Home Treatment
Your child's doctor or a
health care team will tell you how to care for your
newborn if he or she was born with
cleft palate. In general, you need to pay special
attention to:
Feeding. Babies with cleft palate have
problems sucking and swallowing, so feeding can be challenging. Watch for
signs of dehydration, which can develop if your baby is not getting enough
breast milk or formula. Bottle-feeding is usually more successful than
breast-feeding. Some mothers use pumped breast milk to bottle-feed their
babies. After surgery to repair a cleft palate, sucking often feels different
to babies, and they must relearn proper techniques. During the adjustment
period, your health professional can recommend strategies to help you make sure
your baby gets enough nourishment.
Infection. After surgery,
antibiotic medicine is usually given for about 5 days
to reduce the risk for infection. Look for signs of infection, such as a fever
or decreased energy level. Make sure your baby drinks adequate fluids, which
helps prevent infection and promote healing.
Dental care. Children with cleft palate need to
establish good dental habits early in life. Talk with your child about the
possible need for
braces. This may relieve some of your child's fears
about permanent problems with uneven teeth. If possible, have a pediatric
(children's) dentist take responsibility for the overall dental care of the
child with cleft palate.
Hearing. Babies with cleft palate need to
have their hearing tested by the time they are 3 months old. In some cases,
babies born with cleft palate need
ear tubes surgically inserted to help the middle ear
function properly and to restore hearing, reduce pain, and prevent chronic
middle ear infections and future hearing problems. Ear tubes are made of hollow
plastic and require special care.
Preventing cleft palate
Experts are still trying to find answers about why some babies
are born with cleft palate. Although sometimes cleft palate is passed down
through families (inherited), in most cases the cause is not known. Research
continues on how
genes and a mother's health-what she eats and drinks
and hazards she is exposed to during pregnancy-can result in the
fetus developing cleft palate. For example, a mother
who smokes or drinks alcohol during pregnancy may increase the risk that her
baby will be born with cleft palate.3
Take good care of yourself before and during pregnancy so that
your baby will be as healthy as possible. You can do some things to help
prevent your fetus from developing cleft lip or cleft palate, such as taking prenatal vitamins. Also, do not smoke or drink
alcohol while you are pregnant.
What to think about
If your child is born with cleft palate, it is normal to have a
concerns and feelings including anger, fear, guilt,
depression, or denial. You may find it helpful to talk with your child's doctor
or see a counselor. Also, you may find a support group helpful. Support groups
help you to interact with other parents who have babies with cleft
palate.
Fortunately, cleft palate is correctable with surgery, and
scarring is usually minimal. The most difficult period will likely be the first
weeks or months before and during surgery. You may wonder how your friends,
relatives, other children, and even strangers will react to your baby's
appearance. Try to focus on developing a bond with your baby. The rest will
fall into place over time.
Talk to your other children about your baby's cleft palate.
Emphasize that no one is responsible, that it does not hurt, and that it can be
corrected with surgery.
As your child grows, consider explaining how clefts develop. Help
your child understand that being born with a cleft palate has been a part of
making him or her strong and special. Teach your child how to answer questions
from peers and adults about his or her appearance. You can help minimize
concerns or self-consciousness by helping your child understand and accept the
condition as one of many life experiences.
Other Places To Get Help
Organizations
AboutFace USA
P.O. Box 75112
Las Vegas, NV 89136
Phone:
1-888-486-1209 (702) 769-9264
Fax:
(702) 341-5351
E-mail:
info@aboutfaceusa.org
Web Address:
www.aboutfaceusa.org
AboutFace is a nonprofit international organization that provides
information, emotional support, and educational programs to people who have a
facial disfigurement and to their families. They have information on cleft
palate and cleft lip, including how to feed a baby who has these
conditions.
Cleft Palate Foundation and American Cleft
Palate-Craniofacial Association
1504 East Franklin Street
Suite 102
Chapel Hill, NC 27514-2820
Phone:
1-800-24-CLEFT (1-800-242-5338) (919) 933-9044
E-mail:
info@cleftline.org
Web Address:
www.cleftline.org
The Cleft Palate Foundation (CPF) is a nonprofit organization that
provides information to parents of newborns with clefts and other craniofacial
birth defects and to the health professionals who deliver and treat these
infants. The American Cleft Palate-Craniofacial Association (ACPA) is an
international nonprofit association of more than 2,500 health professionals in
over 40 countries who are involved in treatment and/or research of cleft lip,
cleft palate, and other craniofacial conditions.
Callers to the toll-free phone number can get medical information
as well as resources to find regional parent-patient support groups.
La Leche League International (LLLI)
P.O. Box 4079
Schaumburg, IL 60168-4079
Phone:
1-800-LA-LECHE (1-800-525-3243) (847) 519-7730
Fax:
(847) 969-0460
TDD:
(847) 592-7570
Web Address:
www.llli.org
La Leche League International (LLLI) offers information and
encouragement-mainly through personal help-to all mothers who want to
breast-feed their babies. It also offers support and information about
breast-feeding babies with various disabilities, such as cleft lip or cleft
palate. Call for information about a chapter in your area.
March of Dimes
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone:
(914) 997-4488
Web Address:
www.marchofdimes.com
The March of Dimes tries to improve the health of babies by
preventing birth defects, premature birth, and early death. March of Dimes
supports research, community services, education, and advocacy to save babies'
lives. The organization's Web site has information on premature birth, birth
defects, birth defects testing, pregnancy, and prenatal care. You can sign up
to get a free newsletter and also explore Understanding Your Newborn: An
Interactive Program for New Parents.
Thousand Smiles Foundation
P.O. Box 606
Bonita, CA 91908-0606
Phone:
(619) 470-2885
Fax:
(619) 267-4553
E-mail:
information@thousandsmiles.org
Web Address:
www.thousandsmiles.org
This Rotary International organization provides information and
resources on cleft lip, cleft palate, and dental services. A special part of
its mission is providing free cleft lip and cleft palate correction and dental
services to needy children in Mexico and other developing countries.
Wide Smiles
P.O. Box 5153
Stockton, CA 95205-0153
Phone:
(209) 942-2812
Fax:
(209) 464-1497
E-mail:
josmiles@yahoo.com
Web Address:
www.widesmiles.org
This organization offers materials, online chat groups, and other
resources for parents of children with cleft lip and cleft palate.
Kirschner RE, LaRossa D (2000). Cleft lip and cleft
palate. Otolaryngologic Clinics of North America, 33(6):
1191-1215.
Cunningham M (2003). Cleft lip and cleft palate
section of Birth defects, malformations, syndromes. In CD Rudolph, AM Rudolph,
eds., Rudolph's Pediatrics, 21st ed., pp. 748-753. New
York: McGraw-Hill.
Lorente C, et al. (2000). Tobacco and alcohol risk
during pregnancy and risk of oral clefts. Occupational Exposure and Congenital
Malformation Working Group. American Journal of Public Health, 90(3): 415-419.
Other Works Consulted
Beers MH, et al., eds. (2006). Craniofacial
abnormalities. Merck Manual of Diagnosis and Therapy,
18th ed., pp. 2422-2424. Whitehouse Station, NJ: Merck Research Laboratories.
Edwards SP, et al. (2007). Cleft lip and palate. In DM
Laskin, AO Abubaker, eds., Oral and Maxillofacial Surgery, pp. 135-151. Chicago: Quintessence Publishing.
Glenny AM, et al. (2007). Feeding interventions for
growth and development in infants with cleft lip, cleft palate, or cleft lip
and palate. Cochrane Database of Systematic Reviews
(2).
Hoffman WY (2008). Cleft lip and palate. In AK
Lalwani, ed., Current Diagnosis and Treatment in Otolaryngology-Head and Neck Surgery, section 6, pp. 323-339. New York:
McGraw-Hill.
Mueller WA (2007). Oral medicine and dentistry. In WW
Hay et al., eds., Current Pediatric Diagnosis and Treatment, 18th ed., chap. 16, pp. 449-458. New York:
McGraw-Hill.
Wolfe SA, et al. (2006). Surgical treatment of clefts
of the lip and palate from birth to age ten. In S Berkowitz, ed.,
Cleft Lip and Palate: Diagnosis and Management, 2nd ed.,
chap. 22, pp. 459-475. Berlin: Springer.
This information does not replace the advice of a doctor. Healthwise disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.
Kirschner RE, LaRossa D (2000). Cleft lip and cleft
palate. Otolaryngologic Clinics of North America, 33(6):
1191-1215.
Cunningham M (2003). Cleft lip and cleft palate
section of Birth defects, malformations, syndromes. In CD Rudolph, AM Rudolph,
eds., Rudolph's Pediatrics, 21st ed., pp. 748-753. New
York: McGraw-Hill.
Lorente C, et al. (2000). Tobacco and alcohol risk
during pregnancy and risk of oral clefts. Occupational Exposure and Congenital
Malformation Working Group. American Journal of Public Health, 90(3): 415-419.
