An orofacial (or-oh-FAY-shul) cleft is when a baby is born with an opening in the
lip and/or roof of the mouth (palate). Cleft lip and cleft palate is one of the most
common birth defects.
Both cleft lip and cleft palate are treatable. Most kids can have surgery to repair
them within the first year or two of life.
How Do Clefts Form?
During the first 6 to 10 weeks 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. A cleft happens when parts
of the lip and mouth do not completely fuse together.
A cleft lip may just look like a small opening on the edge of the lip, or it could
extend into the nose. It may also extend into the gums. A cleft palate can vary in
size. It could affect just the soft palate, which is near the back of the throat,
or it also could make a hole in the hard palate toward the front of the mouth.
Most clefts fit into one of three categories:
cleft lip by itself — most common in boys
cleft palate by itself — most common in girls
cleft lip and cleft palate together — more common in boys
Usually, cleft lip is found when a baby is born, although some are seen on a prenatal
ultrasound. A cleft palate is more difficult to see until the inside of a child's
mouth is examined carefully after birth.
A cleft can be on one side of the mouth (unilateral clefting) or on both sides
of the mouth (bilateral clefting).
What Causes Clefts?
Doctors don't always know why a baby develops cleft lip or cleft palate, but many
clefts are thought to be a combination of genetic (inherited) and environmental factors
(like some medicines or vitamin deficiencies). Both mothers and fathers can pass on
a gene or genes that cause cleft palate or cleft lip.
Taking certain medicines (such as some anti-seizure medicines) during pregnancy
can increase a woman's chances of having a baby with a cleft lip or palate. Similarly,
moms who don't get the right amount of prenatal nutrients
(for example, not enough folic
acid) may increase their baby's risk of having a cleft. A mother's exposure to
some chemicals also may cause a cleft.
Women who smoke cigarettes, use drugs, or drink
alcohol during pregnancy also increase their baby's risk for birth defects. Moms
who binge drink (drinking four or more drinks in a short period of time) during the
first weeks of pregnancy have a higher risk of having a baby with a facial birth defect
like a cleft lip or cleft palate.
Can a Cleft Cause Other Health Problems?
Cleft lip and cleft palate can affect many actions of the mouth and face. Children
born with cleft lip or cleft palate might have issues related to their feeding, hearing,
teeth, and speech.
Babies with just a cleft lip don't usually have feeding problems. But when the
palate is involved, feeding can be a bigger challenge.
Normally, the palate prevents food and liquids from entering the nose. A cleft
palate causes babies to swallow a lot of air and regurgitate food into the nose. It
also makes it harder for babies to latch on and suck during breastfeeding
or bottle feeding. As a result, a baby with a cleft palate may need a special nipple
and bottle to receive pumped breast milk or formula. Breastfeeding moms might want
to talk with a lactation consultant, who can offer more help and suggestions.
Babies with feeding issues should be seen regularly by a doctor to make sure that
they're gaining weight well.
Middle Ear Fluid Buildup and Hearing Loss
Many children with cleft palate are at risk for fluid buildup in the middle ear.
This fluid can't pass through the Eustachian (yoo-STAY-shun) tube as it should, which
can lead to ear infections
and even hearing loss. So kids with cleft palate usually need ear
tubes placed in their eardrums to help drain the fluid and improve hearing.
Kids with cleft palate should have their ears and hearing checked once or twice
a year, or more if they are having hearing problems.
Children with a cleft lip and palate often have dental problems. These can include
small teeth, missing teeth, extra teeth (called supernumerary), or teeth that are
out of position. They may have a defect in the gums or alveolar ridge (the bone that
supports the teeth). Ridge defects can displace, tip, or rotate permanent teeth or
prevent permanent teeth from coming in properly.
Regular visits with a pediatric dentist
who specializes in cleft lip and palate are important. The dentist will check a child's
mouth growth and development, identify any problems, and make treatments when needed.
Kids with cleft lip have fewer speech problems than those with cleft palate. About
1 in 5 kids with cleft palate have speech problems after surgical repair. Most often,
this means that a child's voice is hypernasal (sounding like the child is talking
through the nose). This happens because the palate doesn't move well enough to prevent
air from leaking out of the nose.
Children with clefts also can have other types of speech problems that aren't to
the cleft; for example, age-related errors such as saying "wed" instead of "red."
Sometimes, the dental problems associated with the cleft will distort some sounds,
particularly "s," "sh," "ch," and "j."
A speech-language pathologist can check a child's speech and language skills and
recommend treatment if needed.
How Are Clefts Treated?
If your child has a cleft lip and/or palate, your pediatrician will talk to you
about a cleft lip and palate treatment team. This team of health care professionals
will work together to meet your family's needs and, ultimately, help your child transition
to adult care.
Besides the pediatrician, your child's treatment team may include:
ear, nose, and throat physician (otolaryngologist)
psychologist or therapist
Your child might visit this care team a few times a year, depending on his or her
needs. Who is seen during a visit depends on the care team's structure and your child's
needs. The team coordinator will help organize the visits, and the team should communicate
with your doctor about the treatment plan.
A cleft lip is usually surgically repaired in the hospital using general
anesthesia when a child is 3 to 6 months old. If the cleft lip is wide, special
procedures like lip adhesion or a molding plate device might help bring the parts
of the lip closer together before the lip is fully repaired. Cleft lip repair usually
leaves a small scar on the lip under the nose.
At 9-12 months of age, a cleft palate usually can be repaired. Plastic surgeons
connect the muscles of the soft palate and rearrange the tissues to close the cleft.
This surgery requires general anesthesia and a short hospital stay for recovery.
The goal of surgery is to create a palate that works well for speech. Some kids,
however, will continue to sound nasal after cleft palate repair, and some may develop
a nasal voice later on.
More surgeries may be needed as children grow older and their facial structure
changes. This can include surgeries like pharyngoplasty, which helps improve speech,
or alveolar bone grafts, which help provide stability for permanent teeth. A bone
graft closes gaps in the bone or gums near the front teeth and is usually done when
kids are between 6 and 10 years old.
As children become teens, they will likely want to (and should) be more involved
in their care. They may want to have their scars made less noticeable, improve the
appearance of their nose and upper lip, or improve their bite with orthognathic surgery.
These operations may improve speech and breathing, overbites/underbites, and appearance.
Dental and Orthodontic Treatment
Maintaining healthy teeth and preventing cavities is very important for kids with
cleft lip and palate, who can have more dental problems than other kids. They should
see a dentist regularly and brush and floss every day.
Kids with cleft lip and palate may begin orthodontic treatment as early as 6 years
of age. It may start with palatal expansion, a process that makes the width of the
palate normal. Later, it may involve braces to position the teeth. Your orthodontist
will discuss these issues with you.
Some kids with a cleft might be missing a permanent tooth, which can be replaced
with a removable appliance or, in early adulthood, a dental implant.
Some kids will need speech
therapy after a repair is done. The speech-language pathologist will closely monitor
your child's progress and talk with you about whether therapy is needed.
How Can I Help My Child?
It can be hard when kids miss school for doctor's appointments, or when speech
problems prevent them from communicating well with their peers. In spite of these
and other social, psychological, and educational challenges, kids with clefts just
want to be treated like everyone else.
Children may face teasing and bullying
because of how a cleft lip and palate look. If your child is teased, talk about it
and be a patient listener. Try to give your child tools to confront teasers. Find
out what your child would like to say to them and practice it together.
Some kids struggle growing up with a cleft lip or cleft palate and might need help
handling certain situations. The psychologists and social workers on the treatment
team can help guide you through these difficult times, so turn to them if your child
needs added support. The good news is that most kids with cleft lip or cleft palate
grow up to be healthy, happy adults.
As your child nears the teen years, remember that your interactions may change.
You could be his or her greatest confidante, or your child may not share his or her
worries with you. Either way, stay open to communication and support your child with
Encourage your child to be confident and not allow the cleft to define who he
or she is.
Make your home a warm, supportive, and accepting place where individual worth
and accomplishments are celebrated.
Encourage your child's friendships and relationships. Make friends with people
who are different from you and lead by example.
As for all kids, being involved in sports, music, and other activities will go
a long way toward helping kids with clefts realize their self-worth.
Give your child the freedom to make decisions and take appropriate risks. Having
chances to make decisions early on — like picking out which clothes to wear
or foods to eat — gives kids the confidence and skills to make bigger decisions
later. It will help them become more independent.
If your child — especially a young child — wants to talk to the class
about cleft lip and palate, set up something with the teacher. Consider asking someone
from the treatment team to attend. But remember that your child may need an extra
boost of confidence to get up in front of the class, so give lots of encouragement.