Like lots of people, Karly spends hours on the phone with
friends. Unlike her friends, though, Karly doesn't take her
phone time for granted - it's taken her years of hard work to
develop her speech skills. Karly was born with a condition called
cleft lip and palate. Today the only sign of the numerous surgeries
she had as a kid to correct the problem is a slight scar on her
upper lip. Keep reading to find out more about cleft lip and palate
and some of the challenges that people who've had it face.
What Are Cleft Lip and Palate?
Cleft lip and palate are birth defects that happen while a baby
is developing in the uterus. During the 6th to 10th week of
pregnancy, the bones and tissues of a baby's upper jaw, nose,
and mouth normally come together (fuse) to form the roof of the
mouth and the upper lip. If the tissue in the developing mouth and
the palate don't fuse together, a baby could be born with a
, or both.
The palate is the roof of the mouth and has two main parts. The
front part behind the teeth is hard and the back part near the
throat is soft. In babies with cleft palate, there is an opening
between the roof of the mouth and the nose. This opening may be
only through part of the palate (either the soft part or hard part)
or through the entire palate. A complete cleft palate occurs when
the left and right sides of the roof of the mouth have not fused
together in the middle. In many cases, a baby born with a cleft
palate also has a cleft lip.
Babies who are born with cleft lip have a gap or opening in the
upper lip. A cleft lip can be either
. With a
unilateral cleft lip
, the gap is only on one side of the lip under either the left or
right nostril and might extend into the nose. The noses of babies
with unilateral cleft lip may look tilted and flat on one side.
Babies born with a
bilateral cleft lip
have a gap on both sides of the lip, and they may have a deep split
in the lip that extends into both nostrils. This may cause the nose
to look broader and shorter than normal. In most cases, the cleft
occurs only in the upper lip and doesn't affect the lower
A person with a cleft could have only a cleft palate, only a
cleft lip, or both a cleft lip and a cleft palate. Cleft lip alone
and cleft lip with a cleft palate occurs more often in boys, while
cleft palate without a cleft lip occurs more often in girls.
What Causes Cleft Lip and Palate?
Doctors don't know exactly why a baby develops cleft lip or
cleft palate, but they believe it may be a combination of genetic
(inherited) and environmental factors (like medications or vitamin
deficiencies). Both mothers and fathers can pass on a gene or genes
that cause cleft palate or cleft lip.
If women take certain medications - such as some medicines to
control seizures - during pregnancy, the chance of having a baby
with cleft lip or palate may be higher. A mother's exposure to
certain chemicals may also cause clefting. Not getting the right
nutrients may increase a child's risk of being born with a
cleft - for example, if the mother has a lack of folic acid in her
Finally, smoking cigarettes and use of drugs and alcohol during
pregnancy increases the risk that a baby will be born with birth
defects. Research has shown that moms who binge drink (drinking
five or more drinks on one occasion) during the first weeks of
pregnancy have a higher risk of having a baby with a facial birth
defect such as cleft lip or cleft palate.
What Happens to People With Cleft Lip and Palate?
One of the first problems a baby with cleft palate might have is
difficulty breathing or eating. Cleft palate usually makes
breastfeeding difficult because the infant has difficulty sucking
properly. The palate prevents food and liquid from going up the
nose when swallowing. To prevent liquid from passing into the nose
of a newborn baby with a cleft palate, a bottle with a special
nipple may be used to feed the baby breast milk or formula.
Kids born with cleft palate may also have frequent ear
infections. That's because air and fluid can't pass
normally through the
, the tubes that connect the throat with the middle ear. This means
fluid and germs can become trapped behind the eardrums and cause
infection. Some people with cleft palate may have had an operation
to put tubes in their ears to help the fluid drain properly. In
some cases, people who had cleft palate may have hearing loss
because of repeated infections and fluid behind the eardrums.
Dental problems, such as cavities and missing or malformed
teeth, also are common in people born with cleft lip and
Speaking clearly can be challenging for kids with cleft cleft
palate. Sometimes the soft palate doesn't move well enough to
prevent air from leaking out through the nose during speech. This
can cause their voices to sound as if they are speaking through
their nose. If the teeth don't line up properly, a
person may not be able to pronounce certain sounds.
In most children with clefts there are no other physical or
learning problems. For some people, cleft palate and cleft lip may
be associated with other birth defects, such as heart defects, or
other physical problems, such as growth disorders and muscle
weakness and some learning difficulty.
What Do Doctors Do?
Because doctors can see cleft lip and palate as soon as a baby
is born, they can begin to evaluate the baby right away and start
developing a treatment plan. Usually, a group of medical
professionals (called a cleft palate team) work together. In most
cases, the clefts can be repaired beginning within the first few
months of life. A cleft palate team includes some or all of the
- a geneticist (a doctor who specializes in conditions that are
- a plastic surgeon
-lo-gist, a doctor who specializes in conditions of the ears,
nose, and throat)
- an oral surgeon
- a dentist
- an orthodontist
- a speech-language pathologist
- the team coordinator
- a social worker
- psychologist or therapist
Every individual who has been treated for cleft lip or palate
has had a different experience. Today, most people born with cleft
palate have surgery to close the hole in the roof of the mouth and
reconnect the palate muscles between 9 and 18 months of age. This
lessens the effects of the cleft palate on their speech
People with a complete cleft lip and palate will need several
surgeries to repair the cleft. These include cleft lip repair,
cleft palate repair, and a bone graft to the upper jaw to close the
bone gap in the gum area. In some cases, further surgery may need
to be done on the palate or in the throat to improve speech.
People with cleft lip or palate may spend a lot of time at the
dentist and orthodontist when they're kids. Hearing tests to
check for hearing problems and speech therapy to improve speech
skills and patterns are often part of treatment, too.
Although most people have these surgeries during childhood, some
may also have plastic surgery during the late teen and young adult
years. People who have had cleft lip and palate repair surgery as
kids may look flatter in the face. They may have jaws that are not
properly aligned and may have difficulty breathing through the
nose. Surgery may be required on the jaws and nose to improve the
bite, breathing, and facial appearance. Surgery may improve scars
from previous operations.
Dealing With Cleft Lip and Palate
Dealing with the physical side of cleft palate can be difficult
enough. But there's also the emotional side: Because cleft lip
and palate are something a person is born with and has no control
over, it can seem unfair. And because appearance can become more of
a focal point during the teenage years, many people with cleft lip
and palate worry about how it might affect their social and
Teens with cleft lip and palate may have had to cope with
bullying or teasing. For many people, this can play havoc with
self-esteem. Others find that surviving bullying gives them an
inner strength and resourcefulness that other teens may not have
developed. Learning to take control over how much you allow
physical appearance to affect your life is a skill that people with
cleft lip and palate usually develop way before their peers.
If you are a girl and are self-conscious about a cleft lip scar,
you may be able to minimize the appearance of the scar with makeup.
Guys may be able to grow facial hair to cover their scars because
hair growth on the upper lip is not usually affected by previous
Your friends, family, and medical team can be a source of
support. Talk to them about how you're feeling. You might also
want to talk to a counselor or therapist because these health
professionals are trained to help people deal with difficult
situations and improve self-esteem.
And if you've had cleft lip and palate, you're not
alone. Your medical team may be able to help you get in touch with
other people with cleft lip or palate or support groups in your
area. It is important to remember that most kids with cleft lip or
palate grow up to be healthy, happy adults!
Joseph A. Napoli, MD, DDS, and Linda Vallino, PhD, MS,
Date reviewed: February 2007
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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