Cleft lip and cleft palate
Filed under: Children's Health
Cleft lip and cleft palate are among the most common birth defects. A
cleft is an opening or split in the upper lip, the roof of the mouth
(palate) or both. Cleft lip and cleft palate result when developing
facial structures in an unborn baby don't close completely.
Cleft lip and cleft palate commonly occur as isolated birth defects, but are also associated with many genetic conditions.
You might feel upset when you first see your baby's cleft, but cleft lip
and cleft palate can be corrected. In most babies, a series of
surgeries can restore normal function and achieve a more normal
appearance with minimal scarring.
Usually, a cleft — or split — in the lip or palate is immediately
identifiable at birth. Cleft lip and palate can affect one or both sides
of the face. Clefts can appear as only a small notch in the lip or can
extend from the lip through the upper gum and palate into the bottom of
Less commonly, a cleft occurs only in the muscles of the soft palate
(submucous cleft palate), which are at the back of the mouth and covered
by the mouth's lining. Because it's hidden, this type of cleft may not
be diagnosed until later.
When to see a doctor
A cleft lip and cleft palate are usually apparent at birth, and your
doctor may start coordinating care at that time. However, a submucous
cleft palate may be obscured by the lining of the mouth and not
diagnosed until later when signs develop. Some babies with this type of
cleft have trouble with feeding, including nasal regurgitation and
excessive gassiness. If your child has these or other signs or symptoms
that concern you, see your child's doctor.
A baby's face and skull form during the first two months in the womb.
Normally, the tissues that make up the lip and palate fuse together. But
in babies with cleft lip or cleft palate, the fusion never takes place
or occurs only partially, leaving an opening (cleft).
Researchers believe that most cases of cleft lip and cleft palate are
caused by an interaction of genetic and environmental factors. In many
babies, a definite cause isn't discovered.
* Genetic factors. Either the mother or the father can pass on genes
that cause clefting, either as an isolated defect or as part of a
syndrome that includes clefting as one of its signs. In some cases,
babies inherit a gene that makes them more likely to develop a cleft,
and then an environmental trigger actually causes the cleft to occur.
* Environmental factors. Fetal exposure to cigarette smoke, alcohol,
certain medications, illicit drugs and certain viruses have been linked
to the development of a cleft.
Several factors may increase the likelihood of a baby developing a cleft lip and cleft palate.
* Family history. Parents with a family history of cleft lip or
cleft palate face a higher risk of having a baby with a cleft.
* Race. Cleft lip and palate are most common in American Indian and
Asian children. Black children are least likely to have a cleft.
* Sex. Males are twice as likely to have a cleft lip with or without
cleft palate. Cleft palate without cleft lip is more common in females.
* Environmental factors. Exposure in early pregnancy to cigarette
smoke, alcohol or illicit drugs may put a baby at higher risk of
developing a cleft.
* Maternal obesity. Obesity in the mother is associated with a slightly increased risk of cleft lip and palate.
Children with cleft lip with or without cleft palate face a variety of
challenges, depending on the type and severity of the cleft.
* Feeding difficulties. One of the most immediate concerns after
birth is feeding. While most babies with cleft lip can breast-feed, a
cleft palate can make sucking difficult or cause gagging or nasal
regurgitation. Your health care team will discuss feeding strategies
with you, such as using a special bottle nipple or a small artificial
palate (obturator) that fits into the roof of the mouth.
* Ear infections and hearing loss. Babies with cleft palate are
especially susceptible to middle ear infections. Over time, repeated ear
infections can damage hearing, but hearing loss may resolve with
treatment. It's important for children with cleft palate to be evaluated
regularly by an audiologist or an ear, nose and throat doctor. Most
children with clefts have tubes inserted in their ears to drain fluids
and help prevent infections.
* Dental problems. If the cleft extends through the upper gum, tooth
development will likely be affected. A pediatric dentist should monitor
tooth development and oral health from an early age.
* Speech difficulties. Because both the lip and palate are used in
forming sounds, the development of normal speech can be affected. A
speech pathologist can evaluate your child and provide speech therapy.
* Psychological challenges. Children with clefts may face social,
emotional and behavioral problems due to differences in appearance and
the stress of intensive medical care. A psychologist and a social worker
can help you and your child deal with the stresses your family
Tests and diagnosis
Most cases of cleft lip and cleft palate are discovered at birth, but
they're increasingly being diagnosed by ultrasound before the baby is
born. If fetal ultrasound shows a cleft, your doctor may offer
amniocentesis — removal of a sample of amniotic fluid from your uterus —
to check for chromosomal abnormalities, since cleft lip and palate can
be part of a genetic syndrome.
After birth, genetic testing may help determine the best treatment for
your child, especially if the cleft is associated with a genetic
condition. Genetic testing also informs parents of their risk of having
additional children with cleft lip or cleft palate.
Treatments and drugs
Treatment of cleft lip and cleft palate requires a comprehensive plan
from birth to adulthood, as reconstruction often involves a series of
operations as the child grows. A health care team that specializes in
cleft lip and cleft palate is ideal because the condition often affects
other areas of a child's health. Specialists on the team may include a:
* Plastic surgeon
* Oral surgeon
* Pediatric dentist
* Ear, nose and throat doctor (otolaryngologist)
* Auditory or hearing specialist
* Speech therapist
* Genetic counselor
* Social worker
The goals of treatment are to ensure the child's ability to eat, speak,
hear and breathe and to achieve a normal facial appearance. Treatment
involves surgery to repair the defect and therapies to improve any
Surgery to correct cleft lip and palate is based on your child's
particular defect. Following the initial cleft repair, your doctor may
recommend follow-up surgeries to improve speech or improve the
appearance of the lip and nose. Surgeries typically are performed in
* Cleft lip repair — between 10 weeks and 3 months of age
* Cleft palate repair — between 6 and 18 months of age
* Follow-up surgeries — between age 2 and late teen years
For children with cleft palate, ear tubes also may be placed during the
first surgery to ventilate the middle ear and prevent hearing loss. Your
doctor will determine the optimal timing for all needed surgeries.
Cleft lip and palate surgery takes place in a hospital. Your child will
receive anesthesia so he or she won't feel pain or be awake during
surgery. Many different surgical techniques and procedures are used to
repair cleft lip and palate and reconstruct the affected areas. In
general, procedures may include:
* Cleft lip repair. To close the separation in the lip, the surgeon
makes incisions on both sides of the cleft and creates flaps of tissue.
The flaps are then stitched together. The repair should create a more
normal lip appearance, structure and function.
* Cleft palate repair. Various procedures may be used to close the
separation and rebuild the hard and soft palate (roof of the mouth). The
surgeon makes incisions on both sides of the cleft and uses specialized
techniques to reposition tissue and muscles. The repair is then
stitched closed, usually along the midline of the roof of the mouth.
* Teethridge bone grafting. If the cleft includes the upper
teethridge, bone from another site in the body, such as the leg,
shoulder or rib, will be transplanted into the teethridge. The bone will
grow and strengthen the ridge so that teeth can grow normally.
Other surgeries may be needed to improve the appearance of the lip and nose. Some children may need jaw surgery.
The scars of a cleft repair are usually positioned in the normal folds
of the upper lip and nose. The scars will fade over time, but will
always be visible.
Surgery can result in significant improvement in your child's
appearance, quality of life and ability to eat, breathe and talk.
Possible risks of surgery include bleeding, infection, poor healing,
puckering of scars, and temporary or permanent damage to nerves, blood
vessels or other structures.
Your doctor may recommend additional treatments based on continuing
assessment of your child's speech, developmental and cognitive
abilities. These may include speech, hearing and psychological
Areas of investigation that may hold promise for the future include:
* In utero repair. Doctors hope that minimally invasive surgical
techniques may someday make it possible to repair cleft lip and cleft
palate in fetuses before birth. In animal experiments, this type of
early repair has resulted in scar-free healing and normal development of
the face and skull.
* Tissue engineering. Tissue engineering is a way to replace damaged
or diseased body tissues. New tissue is created by developing a
sponge-like matrix or scaffold and "seeding" it with stem cells that can
grow into the desired type of tissue and with proteins and other
molecules that help direct cell growth. Researchers have used this
technique to create new bone in the teethridge in people with cleft
Coping and support
No one expects to have a baby with a birth defect. When the excitement
of new life is met with the stress of discovering that your baby has a
cleft lip or cleft palate, the experience can be emotionally demanding
for the entire family.
For the parents and family
When welcoming a baby with cleft lip and cleft palate into your family, keep these coping tips in mind:
* Don't blame yourself. There's probably nothing you could have done differently to prevent the defect.
* Acknowledge your emotions. It's completely normal to feel sad, overwhelmed and upset.
* Find support. Your hospital social worker can help you find community and financial resources and education.
For the child
You can support your child in many ways:
* Focus on your child as a person, not on his or her cleft.
* Point out positive attributes in others that don't involve physical appearance.
* Help your child gain confidence by allowing him or her to make decisions.
* Encourage confident body language, such as smiling and holding his or her head up and shoulders back.
* Keep the lines of communication open. If teasing or self-esteem
issues arise at school, be sure your child feels safe talking with you
After a baby is born with a cleft, parents are understandably concerned
about the possibility of having another child with the same condition.
While many cases of cleft lip and cleft palate can't be prevented,
consider these steps to increase your understanding or lower your risk:
* Consider genetic counseling. Your doctor can advise you on what
genetic testing may offer, such as how much a family history of clefting
increases your risk, as well as how blood or DNA samples can be tested
for chromosomal syndromes.
* Take prenatal vitamins. Taking a multivitamin before conceiving
and during pregnancy may help prevent cleft lip and cleft palate. If
you're planning to get pregnant soon, begin taking a prenatal
* Don't use tobacco or alcohol. Use of alcohol or tobacco during
pregnancy increases the risk of having a baby with a cleft defect.