Like many teens, Karly spends hours chatting with friends. Unlike her friends, though, it's taken years of hard work for Karly to develop her speech skills. Karly was born with a condition called cleft lip and palate. Today the only sign of the surgeries she had as a kid to correct the problem is a slight scar on her upper lip.
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 cleft lip or cleft palate, 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.
In many cases, a baby born with a cleft palate also has a cleft lip, which is a gap or opening in the upper lip. A cleft lip can be either unilateral or bilateral.
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 lip.
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.
Doctors don't always know exactly why a baby develops cleft lip or cleft palate, but believe it may be a combination of genetic (inherited) and environmental factors (like certain 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 a cleft condition. 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 diet.
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 four or more drinks in one sitting) 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 trouble eating. Cleft palate usually makes breastfeeding difficult because the infant has trouble sucking properly. The palate is supposed to prevent food and liquid from going up the nose when eating. 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 eustachian (pronounced: yoo-STAY-shun) tubes, the tubes that connect the back of 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, are common in people born with cleft lip and palate.
Speaking clearly can be challenging for kids with 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 a person's voice to sound as if he or she is speaking through the nose. If the teeth don't line up properly, a person may not be able to pronounce certain sounds.
Most kids with clefts have no other physical or learning problems. For some, though, 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.
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 starting in the first few months of life.
A cleft palate team includes some or all of these specialists:
a geneticist (a doctor who specializes in conditions that are inherited)
a plastic surgeon
an otolaryngologist (pronounced: oh-toe-lar-en-GOL-uh-jist, a doctor who specializes in conditions of the ears, nose, and throat)
an oral surgeon
a speech-language pathologist
an audiologist (hearing specialist)
the team coordinator
a social worker
psychologist or therapist
Each person 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 between 9 and 12 months of age.
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, more surgery may be needed 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. 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 also may have plastic surgery during the late teen and young adult years. This might include jaw surgery to improve the bite and position of the jaws, improve breathing function and appearance of the nose, and improve facial balance.
Dealing with the physical side of cleft palate can be hard enough. But there's also the emotional side: Because cleft lip and palate are something someone is born with and has no control over, it can seem unfair. And because appearance can be more of a focal point during the teen years, many people with cleft lip and palate worry about how it might affect their social and emotional lives.
Teens with cleft lip and palate may have had to cope with bullying or teasing. For many, this can injure 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 a mustache.
Your friends, family, and medical team can be a source of support. Talk to them about how you're feeling. You also might 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 others with cleft lip or palate or support groups in your area. It's important to remember that kids with cleft lip or palate can and do grow up to be healthy, happy adults!