Cleft lip is a treatable birth
defect that occurs when the tissues of the upper jaw and nose do not join as
expected during fetal development, resulting in a split (cleft) in the lip. A
cleft lip generally does not cause health problems. Occasionally, some infants
with cleft lip have difficulty feeding.
Cleft lip usually
involves only one side of the upper lip. It rarely occurs in the lower lip.
Cleft lip often occurs with
cleft palate; the two are the most common birth
defects of the head and neck.1
What causes cleft lip?
Cleft lip may be caused by
genetic and environmental factors. If you were born with a cleft palate or
cleft lip, your children will have an increased risk for being born with one of
these.
A baby may be at higher risk for being born with cleft lip
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?
A
cleft lip is visible at birth. Beyond the distinctive physical appearance, no
other symptoms usually are noticed. Babies with cleft lip typically do not have
any problems breast-feeding or bottle-feeding. But babies with both cleft lip
and cleft palate may have feeding problems. See a picture of a
cleft palate.
How is cleft lip diagnosed?
Cleft lip usually is
diagnosed at birth from the distinct way a newborn's face looks. A baby's first
physical exam shortly after birth can provide more details about the condition,
such as whether the baby also has a cleft palate.
Sometimes a
fetal ultrasound during pregnancy can detect a cleft
lip. But it is not always reliable for this purpose.
How is it treated?
When the surgery takes place
depends upon a number of things, including what your doctor suggests, your
baby's health, and the cleft itself. Most doctors agree that cleft lip should,
in most cases, be repaired by the time a baby is 3 to 6 months old.
The exact timing of treatment and surgery takes into account the severity
of the cleft lip, the size and health of the baby, and other concerns the
health care team may have for the baby.
The type of surgery to
correct a cleft lip depends on how much of the lip is involved, whether the
baby has any defects of the nose, and whether cleft palate is also present.
Additional surgeries may be done as the child grows to help the mouth adapt and
to improve the appearance of a scar. The number and type of surgeries depend on
other aspects of your baby's health, such as whether other facial defects are
present. For example, if your baby's nose is irregularly shaped, additional
surgery may be done later to correct it for health or cosmetic reasons.
Other treatment is specific to the kinds of problems that can develop,
such as speech therapy for word pronunciation problems.
A
cleft lip is obvious at birth. Beyond the distinctive
physical appearance, a cleft lip usually does not cause other symptoms or
feeding problems. Babies born with cleft lip often can breast-feed
successfully. And bottle-feeding usually is not a problem if you use special
nipples with hole openings that are slightly bigger than newborns usually
require.
Feeding problems usually only occur in babies with cleft
lip if they also have
cleft palate.
Usually cleft lip is not
related to other health problems. But cleft lip with cleft palate can be linked
to other health conditions, such as
fetal alcohol syndrome or
chromosomal disorders. A baby born with cleft lip who
has other physical abnormalities or symptoms, such as an irregularly shaped
head or respiratory problems, will be evaluated for these other types of health
problems.
Exams and Tests
Diagnosis of
cleft lip is based on a
physical exam of your baby's mouth. Cleft lip usually
is obvious at birth because of distinctive facial characteristics. A baby with
cleft lip should be examined carefully for the presence of other birth defects,
such as
cleft palate.
If cleft lip occurs with
cleft palate, it is sometimes associated with another health condition, such as
fetal alcohol syndrome or
chromosomal disorders. 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 lip may need
testing for complications, such as speech and hearing problems.
Early detection
Fetal ultrasound can sometimes detect cleft lip as early as 14 to 16 weeks of
gestation. But fetal ultrasound is not reliable for this purpose. Cleft lip may
go completely undetected or its appearance on the ultrasound may be
misinterpreted.
Sometimes an inherited disease or condition causes
a number of defects that includes cleft lip and/or cleft palate. If you have
had a fetal ultrasound that shows your
fetus is likely to have cleft lip and/or cleft palate
along with 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 always needed to treat
cleft lip, and sometimes multiple procedures are
needed over several years. Some treatments, such as speech therapy, may
continue into early adulthood.
Your child's doctor or a
health care team will examine your newborn before your
baby goes home from the hospital. These professionals can tell you how to care
for your child before surgery.
Before surgery
Sometimes cleft lip is treated with
presurgical supports, such as special dental splints, soft dental molding
inserts, or medical adhesive tape. A child with a cleft lip and
palate may be treated with presurgical
supports.
Surgical repair of cleft lip
When the surgery
takes place depends upon a number of things, including what your doctor
suggests, your baby's health, and the cleft itself. Most doctors agree that
cleft lip should, in most cases, be repaired by the time your baby is 3 to 6
months old.2
When considering the timing
and type of surgery needed to repair a cleft lip, the
doctor considers a variety of factors that relate to the
classification of the cleft and the baby's overall
condition. Such considerations include:
Whether the cleft is complete or incomplete.
A complete cleft lip is a deep split in the upper lip that extends into one or
both sides of the nose. An incomplete cleft lip affects only one side of the
upper lip and may appear as a slight indentation or as a deep notch. See a
picture comparing a complete cleft lip and an incomplete cleft lip.
How much of the lip is involved. A cleft lip can affect
one side of the upper lip (unilateral) or both sides
(bilateral).
Whether the baby has a
cleft palate or any defects of the nose. Usually, any
additional facial disfigurements make surgical treatment more
complex.
The size and health of the baby.
Whether it
is possible that the baby has a broader health condition.
After surgery
After surgery to correct a cleft
lip, your baby may need to wear a head bonnet across the upper lip and taped to
the cheeks, face, and head. The bonnet is made of a strap bandage reinforced
with wire. This device helps prevent the lip from stretching and protects the
stitches from breaking or separating. The head bonnet is worn for as long as it
takes your child's lip to heal.
Your baby's arm movements may be
restricted with splints or other material for as long as 3 weeks. This is
sometimes needed to prevent your baby from touching and damaging the
stitches.
After your baby's surgery, you will need to:
Take measures to prevent infection and
promote healing. Your health care team will offer guidance, but in general make
sure you keep the area clean and protect the lip from injury.
Have
your child closely monitored by a health care team. It is a good idea to have a
children's (pediatric) dentist for your child's general dental care and to
consult an orthodontist as your child grows.
Feeding by bottle or at the breast usually doesn't
require any special measures.
Usually the lip heals well after
surgery, with very little evidence of the cleft. Sometimes there is a slight
scar, but it is not usually very noticeable. Males usually develop normal
facial hair growth on their upper lip as they mature. Some males grow mustaches
to hide the scar. Females usually can cover the scar with makeup and lipstick.
Sometimes another lip surgery is needed at 4 or 5 years of age, and surgery on
the nose may not occur until adolescence.
Preventing cleft lip
Experts are still trying to
find answers about why some babies are born with cleft lip. Although sometimes
cleft lip 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 lip. Studies show that if you
smoke or drink alcohol during pregnancy, you may increase the risk that your
child will be born with a cleft lip and/or cleft palate.3
Take good care of yourself before and during
pregnancy. You can do some things to help
prevent your fetus from developing cleft lip or cleft palate, such as taking prenatal vitamins and folic acid supplements. If
you are planning a pregnancy and you have neither previous family history of
cleft lip or palate nor a child with cleft lip or palate, taking 400 mcg (0.4
mg) of folic acid daily for 6 to 8 weeks is recommended. If you have a child
with a cleft lip or palate or if you have a family history of cleft lip or
palate, then 4 mg of folic acid daily for 6 to 8 weeks is recommended prior to
pregnancy.4 Taking folic acid requires a prescription
from your doctor.
Also, do not smoke or drink alcohol while you
are pregnant.
Home Treatment
Before your newborn goes home from the
hospital, your child's doctor or a
health care team will examine your baby and can tell
you how to care for your child before surgery. After surgery to correct a
cleft lip, you'll need to keep your baby's lip and
nose area clean and free of infection. You will get specific instructions to
guide you through this process. For example, the doctor may tell you to:
Clean the lip and nose area in a certain
way.
Apply a generous coating of antibacterial ointment to the area
after cleaning, typically for the first 3 days after the surgery.
Caring for a child with a birth defect requires extra
time, patience, and energy. Although it is easy to ignore your own needs,
remember that it is important that you be physically and emotionally healthy in
order to give your child the best care.
What to think about
If your child is born with
cleft lip, it is normal to experience
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. A support group
allows you to interact with other parents who have babies with cleft
lip.
Fortunately, cleft lip is usually corrected with surgery with
only slight scarring. During the first weeks or months before surgery can be
performed, 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.
It
may be helpful to talk to your other children about the condition. Let them
know 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. Emphasize your pride and love for your child, who
successfully handled surgery as a baby. Convey that being born with a cleft lip
has been a part of making your child strong and special. Teach your child how
to answer questions from peers and adults about the scar. You can help minimize
concerns or self-consciousness about the scar by helping your child understand
and accept it 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.
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.
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.
American College of Obstetricians and Gynecologists
(2003). Neural tube defects. ACOG Practice Bulletin No. 44. Obstetrics and Gynecology, 102(1): 203-210.
Other Works Consulted
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.
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.
Wilcox AJ, et al. (2007). Folic acid supplements and
risk of facial clefts: National population based case-control study.
BMJ. Published online January 26, 2007
(doi:10.1136/bmj.39079.618287.0B).
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.
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.
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.
American College of Obstetricians and Gynecologists
(2003). Neural tube defects. ACOG Practice Bulletin No. 44. Obstetrics and Gynecology, 102(1): 203-210.