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Embracing Life Program - About Cleft Lips and Palates

Embracing Life Program - So that their lives may be transformed

About Cleft Lips and Palates

When most people think of children with cleft lip and palate (CLP), a facial deformity is what immediately comes to mind, but few are aware of the additional difficulties that these children and their families encounter on a daily basis. CLP affects virtually every aspect of a child’s life, not only his or her immediate family but also society in general. Curing this condition is a process that takes years, requires help from many different professionals and is financially costly.

CLP is caused by abnormal development of the cranial neural crest (a group of cells that eventually become the face and head). During embryonic development, the cells that ultimately form the tissues of the face migrate into position according to a complex series of molecular signals. Disruption of these signals can lead to improper cell migration and, consequently, to craniofacial abnormalities such as CLP, in which there is a gap (or gaps) in skin, muscle and bones of the face. There are many causes of this disruption, and scientists have determined that both genetic and environmental factors produce clefting. Approximately 70% of clefts occur without any additional craniofacial abnormalities,1 whereas the remainder can be associated with a broader syndrome.

Whether alone, or as one symptom of a larger disorder, CLP causes a host of problems for the child born with this condition. Children born with CLP have difficulty obtaining adequate nutrition, and they may fail to gain sufficient weight and strength to undergo surgical treatment. These children may require specialized feeding equipment, and their parents must be properly educated regarding the means to provide the child with the necessary nutrition.2 Abnormalities in facial anatomy can also affect breathing and vision. These children have a predisposition to frequent ear infections, which can cause hearing problems and further affect speech development. Later in childhood, additional problems may manifest themselves; for instance, teeth may be absent or erupt in abnormal positions; almost all of these children will require orthodontic treatment to correct the position of their teeth; many require additional surgeries because of abnormal growth of the facial skeleton.

These physical problems may in turn lead to psychological and social problems as the child grows. Because of their different appearance, children with CLP may find it difficult to be accepted by society, by their peers and even by their own families. Difficulties with hearing and speech can affect the child’s ability to complete his or her education, thus influencing future opportunities for employment. Ultimately, the physical, social and psychological difficulties caused by CLP place a substantial economic burden on these individuals, their families and their communities.

Treatment of CLP is a lengthy and complex process that requires the work of professionals from a number of fields. Surgery to repair the cleft is key, but more than a single procedure may be needed. A great deal of training is needed to prepare surgeons to perform such delicate work on these most vulnerable of patients; highly specialized equipment is needed to perform the surgery. Furthermore, surgery is only the beginning; dental care is necessary, possibly requiring additional surgeries and/or orthodontic treatment; speech therapy may be required. Psychological counseling may be needed to help the child adjust to all of these changes and to properly integrate into society; counseling is also frequently necessary for the families to deal with the prospect of having a child with special needs and with the often overwhelming treatment process.

According to the World Health Organization,3 CLP occurs in one out of every 500-700 live births; rates vary by geographic location and race. According to a 2013 study by Hussein and colleagues,4 the incidence of CLP in Palestine is 1.05/1,000 live births. In general, boys are slightly more affected than girls.

Until now, the system of care for these children in Palestine has relied heavily on outside aid, via volunteer surgical delegations. Over the past 10 years, our partners, working with local Palestinian surgeons, have completed over 1,500 surgeries free of charge. All of the follow-up for these surgeries has been performed by local Palestinian surgeons.

The higher goal of our partnership in Palestine is to teach local practitioners to provide full care for these children without depending on outside services. To this end, in addition to the surgical training and facilities the program provides, we are partnering with universities and hospitals to research the genetic mechanisms of clefting in Palestinians. This combination of clinical work with research will foster the broad infrastructure to support the care of children with craniofacial anomalies and to serve their families as well.

1 Dixon et al. 2011, Nat Rev Genet; 12(3): 167–178

2 Devi et al. 2012, J Int Soc Prev Community Dent.; 2(2):31-7

3 http://www.who.int/mediacentre/factsheets/fs318/en/

4 Hussein et al. 2013, Craniofac J [Epub ahead of print]. doi: 10.1597/12-097

5 Chao et al. 2014, Lancet Glob Health 2(6) e334-345. doi: 10.1016/S2214-109X(14)70213-X