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Health Indicator Report of Birth Defects: Orofacial Clefts

Orofacial clefts are among the most common birth defects, and can occur alone or in combination with other defects. Orofacial clefts can significantly affect children's health. People with orofacial clefts require medical and surgical services to treat the structural malformations. Even after surgery, they may still be at increased risk of illness and disability, particularly with respect to feeding, hearing, and communication, and often require long term health and rehabilitation services to improve outcomes and reduce complications. The burden of disease and medical costs associated with orofacial clefts are substantial. Just the direct medical costs to treat a child with cleft lip and palate was estimated to be over $22,000 (in 2002 dollars, N. Waitzman, 2005). For the estimated 100 children born with these conditions every year in Utah, their direct medical costs would therefore be in the order of $2.2 million. This figure, though high, is only partial. For example, it does not include costs for special and developmental services, or indirect costs to the child or young adult and to the family. Nor does the figure address the personal and familial burden on quality of life. Although orofacial clefts are common in the U.S., they appear to be even more frequent in Utah, which reports among the highest rates of orofacial clefts in the U.S. and internationally. Tracking orofacial cleft occurrence in Utah is crucial in assessing this common birth defect and in helping to plan for the care of affected children. Cost and quality of life for affected families are other crucial areas of assessment.

Orofacial Clefts Rates by Race/Ethnicity, Utah, 1995-2009

Notes

Hispanic persons may be of any race.

Data Source

Utah Birth Defect Network

Definition

Number of cases of cleft lip or cleft palate per 10,000 births to Utah residents.

Numerator

Number of cases of orofacial clefts (defined as cleft lip with or without cleft palate, or as cleft palate alone) in live births and fetal deaths occurring among women residing in Utah.

Denominator

Number of live births and stillbirths among women residing in Utah.

How Are We Doing?

The Utah Birth Defect Network (UBDN) began tracking rates of orofacial clefts in Utah in 1995. The current report is based on 1,533 affected births born from 1995 through 2009 and reported to the UBDN. The rate of orofacial clefts for the period 1995 through 2009 in Utah was 1 in 479 births (or, equivalently, 21 affected newborns per 10,000 births). The rate of cleft lip with or without cleft palate was approximately twice that of cleft palate alone. Based on these data, the UBDN estimates that, on average, more than 100 affected children are born in Utah every year. Of these children, approximately 65 will have cleft lip with or without cleft palate, and 35 will have cleft palate alone. Rates of orofacial clefts are similar among White, Asian/Pacific Islanders, and Hispanic Utahns. The rate among Native American Utahns is apparently higher but this estimate is based on few affected children, leading to wide confidence intervals that overlap with those of the other racial/ethnic groups. The number of affected births among African American Utahns is small which results in unstable rate estimates. Since tracking of orofacial clefts began in Utah in 1995, rates have shown minor yearly variations with no obvious time trend.

How Do We Compare With the U.S.?

Rates of orofacial clefts in Utah are higher than those in other parts of the United States and are higher than those reported countries outside of the U.S. The reasons for such higher rates are unclear, and studies are ongoing in Utah and elsewhere to understand its basis.

What Is Being Done?

Since 1995, the UBDN, a co-agency program of the Utah Department of Health and Department of Pediatrics, has been tracking rates of orofacial clefts, evaluating their origin, and, more recently, researching their causes. The UBDN also conducted a study to assess the quality of life of affected children and families (Stone MB et al. Improving quality of life of children with oral clefts: perspective of parents. J Craniofac Surg 2010;21:1358-1364). Current activities of the UBDN include 1) tracking rates across the state and in different population groups; 2) working with local, national and international partners in evaluating potential reasons for the high rate in Utah; and 3) supporting the search for further clues on causes. Researchers in Utah are also planning to estimate the medical costs associated with orofacial clefts and determine if clustering occurs in different geographic areas.

Available Services

Cleft Palate / Craniofacial Clinic Primary Children's Medical Center 100 N Mario Capecchi Drive Salt Lake City, Utah 84113 Phone (801) 662-1630 www.intermountainhealthcare.org/hospitals/primarychildrens/services See craniofacial clinic information on this website. Children with Special Health Care Needs 44 N Mario Capecchi Drive PO Box 144610 Salt Lake City, UT 84114-4610 Phone (801) 584-8284 Toll Free (800) 829-8200 http://health.utah.gov/cshcn CSHCN provides services for children who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition. Baby Watch Early Intervention Services 44 N Mario Capecchi Drive PO Box 144720 Salt Lake City, Utah 84114-4720 Phone (801) 584-8226 Toll Free (800) 961-4226 www.utahbabywatch.org Statewide EI services are available for families of affected children from birth to three years of age that include child health assessment, service coordination among providers, occupational and physical therapy, and speech and language therapy. Local Resources: Utah Birth Defect Network www.health.utah.gov/birthdefect Utah Parent Center & Family to Family Network 2290 East 4500 South, Suite 110 Salt Lake City, Utah 84117-4428 801-272-1051 Toll Free (800) 468-1160 voice or TDD Espanol (801) 272-1067 www.utahparentcenter.org www.utahfamilytofamilynetwork.org
Page Content Updated On 10/26/2011, Published on 10/27/2011
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Content updated: Tue, 28 Jul 2015 19:46:07 MDT