Current Health Topics

July is National Cleft & Craniofacial Awareness and Prevention Month

The term cleft means a split or a divide. Children can be born with a variety of cleft types and with variable severity. Oral Clefts are birth defects of the structures that form the mouth. An oral cleft is a split or separation in the baby s lip and/or palate. Cleft lip means that the two sides of the upper lip did not grow together properly. Cleft palate is a split or opening in the roof of the mouth. Although cleft lip and cleft palate may occur in the same baby, both conditions can happen separately. The opening in the lip or palate may be unilateral, only on one side, or bilateral, on both sides. Another type of cleft is called Submucous cleft palate. This is when the cleft of the muscles and/or bone for the roof of the mouth is covered by a mucous membrane, making it difficult to see the presence of the cleft when looking in the mouth.

Craniosynostosis happens when the bones in the baby s skull fuse too early. Microtia is when the external portion of the ear does not form properly, and Anotia occurs when the external portion of the ear is missing.

Usually, a doctor will see a cleft lip and/or palate at birth. Sometimes a cleft lip (and, rarely, a cleft palate) can be seen before birth on an ultrasound. If the cleft palate is not easy to see, it may not be noticed until your baby has trouble feeding. Your baby may have a weak suck and take a long time to feed. Milk may come out of your child s nose during feeding. Submucous clefts may be diagnosed soon after birth due to your baby s poor feeding skills.

It is estimated that cleft lip with or without cleft palate affects 1 in 940 births in the United States, presenting in approximately 4,437 cases each year. Clift lip and/or palate that occurs with no other major defects is the most common birth defect in the United States. Cleft lip and cleft palate occur very early in pregnancy. No single cause has been identified, but the majority of clefts appear to be due to a combination of genetics and environmental factors. The Centers for Disease Control and Prevention and research groups have identified several risk factors that can increase the chance of having a baby with a cleft. These include genetic factors, as well as smoking during pregnancy, diabetes, substance abuse, certain medicines (such as drugs for epilepsy), and poor prenatal health care.

A child born with a cleft frequently requires several different types of services, all of which need to be provided in a coordinated manner over a period of years. These services are best provided by a cleft palate/craniofacial team, which is a multidisciplinary team of specialists who work together to provide the best possible care for your child. At a minimum, this team should include a pediatrician, nurses, ear-nose and throat doctors (ENT), audiologists, psychologists, social workers, and nutritionists. The surgeon will close your child s cleft lip and/or palate, usually before 1 year of age. The dentist and orthodontist can help straighten your child s teeth and align the jaw. The speech-language pathologist or team nurse specialist will assess your child s feeding during infancy and the speech-language pathologist will monitor your child s speech and language development.

More information can be found in the following locations:

  • The American Cleft Palate-Craniofacial Association (ACPA) is an international non-profit medical society of health care professionals who treat and/or perform research on birth defects of the head and face. The ACPA website includes information about team care, education opportunities, and a host of resources related to cleft palate-craniofacial care.
  • The Cleft Palate Foundation (CPF) has a website designed for parents, patients, and health care professionals. A multitude of resources can be found on topics such as breastfeeding, insurance company issues, financial assistance, and challenges during school-age, teenage, and adult years. Additionally, a complete listing of cleft palate teams throughout the United States can be found on this website.

Both of these foundations maintain a listing of teams, by state, from all over the United States. These teams have met certain standards for team care. A number of international teams also are listed on this site. Visit the team care resources page on the ACPA website. You can also call the Cleftline at 1-800-24cleft to locate a team and speech-language pathologist experienced in working with cleft palate speech disorders.