If you are an expectant parent who has received a prenatal diagnosis of cleft lip and palate (CLP), or if CLP is suspected, contact Children's Hospital Boston's Advanced Fetal Care Center. The AFCC provides diagnostic studies, counseling, treatment and care when CLP is suspected during pregnancy.
What are a cleft lip and a cleft palate?
Cleft lip and cleft palate are birth abnormalities of the mouth and lip that occur early in pregnancy when the sides of the lip and the roof of the mouth do no fuse together as they should.
The lip is formed during the first 4 to 6 weeks of pregnancy. During this time, skin and the muscle normally grows in from both sides of the face to join the skin that grows down from the tip of the nose. If the growth and union of these parts are not complete, the baby is born with a cleft lip.
A cleft lip appears as a narrow opening in the skin of the upper lip that extends all the way to the base of the nose. It may occur on one side only (unilateral) or on both sides (bilateral).
A cleft palate is an opening between the roof of the mouth and the nasal cavity. The child’s palate forms during the first 8 to 12 weeks of pregnancy. During this time, bone and muscle grow in from both sides of the upper jaw and join to form the palate, which is the roof of the mouth and the floor of the nose. If the fusion of these two shelves of cone and muscle is not complete, the baby is born with a cleft palate; an opening between the mouth and the nose.
Fast facts:
Cleft lip and cleft palate are the fourth most common birth defects in the US.
They affect about one in every 700 births annually.
They occur less frequently among African-Americans.
A child can have cleft lip, cleft palate, or both.
Cleft lip and cleft palate together are more common in boys.
Most babies born with a cleft are otherwise healthy with no other birth abnormalities.
What do a cleft lip and a cleft palate look like?
A cleft lip appears as a narrow opening in the skin of the upper lip that extends all the way to the base of the nose. It may occur on one side only (unilateral) or on both sides (bilateral).
Unilateral Incomplete (Click to see larger image)
Unilateral Complete (Click to see larger image)
Bilateral Complete (Click to see larger image)
A cleft palate is an opening between the roof of the mouth and the nasal cavity.
What causes a cleft lip and/or cleft palate?
The precise cause is unknown. It is believed to be the result of a combination of genetic and environmental factors that affect the fetus during the early stage of pregnancy.
Environmental factors may include certain drugs (Retinoic Acid, Dilantin, Steroid, Nitrofen), Folate deficiency, illnesses, and the use of alcohol or tobacco while a woman is pregnant.
Some children born with a cleft have one or more relatives with a cleft. In most cases there is no family history of cleft lip and/or cleft palate.
What are the chances of having a child with a cleft lip or cleft palate?
Cleft lip and cleft palate are the fourth most common birth defects in the country. They affect about one in every 700 births annually. Cleft lip and cleft palate together are more common in boys. The chances vary for each family. However, if a parent has a cleft lip or cleft palate or has a child with one, the chances of having another child with the condition increases. Both mothers and fathers can pass on a gene or genes that cause cleft lip or cleft palate.
Can cleft lip and cleft palate be prevented?
We must fully understand genes to fully understand how to prevent cleft lip and palate. Some theories suggest that genetic testing and counseling, limiting alcohol and tobacco consumption, and increasing the intake of folic acid may contribute to the prevention of cleft lip and palate.
What problems are associated with a cleft lip or cleft palate?
In addition to the cosmetic abnormalities, children with a cleft lip or palate may experience the following complications:
feeding difficulties
ear infections and hearing loss
speech and language delay
dental problems
Stickler Syndrome, a connective tissue disorder and the most common known familial basis for Robin Sequence, can also be associated with cleft lip and cleft palate. Often, this autosomal dominant disorder first comes to the family’s attention after the birth of a child with a cleft palate.
How is a cleft lip or cleft palate diagnosed?
Because clefting causes specific visible symptoms, it can be detected through a prenatal ultrasound. If the clefting has not been detected prior to the baby's birth, it's identified immediately afterward.
The symptoms of cleft lip and palate can be detected during the first examination by your infant's PCP. Although the severity of the abnormality can vary, the abnormality can be identified upon inspection of the mouth and lips as there is an incomplete closure of either the lip, palate, or both.
Feeding difficulties, ear infections, hearing loss, speech and language delay, and dental problems are all symptoms a child with cleft lip and/or cleft palate may experience.
How are a cleft lip and cleft palate treated?
Treatment for these abnormalities includes reconstructive surgery and a complete team approach to help with the multiple complications that can occur.
Members of a child's cleft lip and palate treatment team usually include:
plastic surgeon to repair the cleft lip and/or palate
ear, nose, and throat physician
oral surgeon
dentist and orthodontist to help align teeth and treat gum problems
speech-language pathologist to improve speech skills
audiologist to check for hearing problems
nursing
Treatment depends on the severity of the anomaly. Generally the program will follow children in a multidisciplinary clinic for 6 months to 1 year. Follow up care for CLP also depends on the severity of the anomaly. A patient can be seen on a 6 month to a yearly basis right through adolescence as revisions are needed.
For cleft lip alone, the abnormality can be repaired when the child us several months old, usually when the baby is 10 to 12 pounds or can be decided upon by your child's surgeon. The goal of this surgery is to fix the separation of the lip; revisions however, may be needed.
Cleft palate repairs are normally performed between the ages of 9 to 18 months, but typically before two years of age. Because this is a more complicated surgery, it is done when the baby is bigger and better able to tolerate the surgery. Again, the timing of the surgery will be decided by the specialist. The goal of this surgery is to fix the roof of the mouth so that your child can eat normally as well as develop normal speech. Sometimes, however, a revision is needed.
What to do if your child has been prenatally diagnosed with a cleft lip and/or palate:
If you are an expectant parent who has received a prenatal diagnosis of cleft lip and palate (CLP), or if CLP is suspected, contact Children's Hospital Boston's Advanced Fetal Care Center. The AFCC provides diagnostic studies, counseling, treatment and care when CLP is suspected during pregnancy.
What to do if your newborn has a cleft lip and/or palate:
If your newborn has a cleft lip and palate (CLP), or if CLP is suspected, contact Children's Hospital Boston's Cleft Lip and Palate Program. The Cleft Lip and Palate Program provides a wide range of diagnostic, treatment and follow-up services, including:
plastic surgery to repair cleft lip and/or palate
dental and orthodontic treatment to help align teeth and treat gum problems
speech therapy to improve speech skills
hearing tests to check for hearing problems
The program also provides information, education and support to patients, their families and health care providers.
What is the long-term outlook for cleft lip and cleft palate?
After the operation, the lip, nose, and face are swollen for a few days. The scar may be red for several weeks. It will take 6 to 12 months for the scar to soften and fade. The scar never disappears but in time, it is usually difficult to see. Your child’s lip and nose will be near normal in appearance. About 5 to 15 % of children who have had cleft palate repair will need an operation to correct persistent nasal speech. This operation is called a
pharyngeal flap” and is usually done when the child is about 4-5 years old. Children whose cleft involved the gum line usually need another operation to allow the permanent teeth to come out. The operation called an “alveolar bone graft”, is performed to provide a complete bony gum line where the teeth erupt. This operation is usually performed when the child is about 8 to 10 years old. Sometimes minor revision of the lip and nose can be done during the bone graft operation.
The goal is to minimize the number of operations the patients need to go through while making sure the patient looks the best they possibly can. With CLP especially, revisions may be necessary through adolescence as the face and head grow i.e. the retrusion of face, or under-bite, may require more revisions. Women are more easily motivated to go through with revisions due to the emphasis on their appearance, whereas, males may resist the need for another surgery.
What research is being done related to cleft lip and palate?
Dr. Shelley Abramowicz's research interests focus on orthognathic surgery, cleft lip and palate, and temporomandibular joint disorder. She has been a primary investigator on studies involving the etiological factors in the development of cleft lip and palate.
Dr. John Mulliken's research interests include craniofacial anomalies. Ongoing studies include those with a focus on evaluating facial growth in children with a host of different craniofacial anomalies. Research conducted includes longitudinal studies to examine genetic, phenotypic, cognitive, and behavioral components of nonsyndromic craniosynostosis.
Dr. Bonnie Padwa's research interests fall within the fields of oral and maxillofacial as well as craniofacial surgery. Ongoing studies include those with a focus on evaluating facial growth in children with a host of different craniofacial anomalies. Research has ranged from rare disorders such as facial infiltrating lipomatosis and cervicofacial lymphatic malformation with associated skeletal overgrowth, to more common conditions such as cleft lip/palate and hemifacial microsomia.
Cleft Lip and Cleft Palate
