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Health Indicator Report of Birth Defects: Neural Tube Defects

Most neural tube defects have severe consequences for the affected pregnancy or child. Many affected pregnancies are lost before birth. Babies with anencephaly usually die within days from birth. Babies with spina bifida are at much increased risk of illness, long term disability, and premature death. These children often need lifelong health and rehabilitation services to improve outcomes and reduce complications. Since 1992, studies have shown conclusively that taking a daily supplement containing 0.4 milligrams of folic acid, a B-vitamin, before conception can decrease substantially the risk of a pregnancy being affected by a neural tube defect and increase the odds that the baby is born healthy. Promoting folic acid awareness and use of a multivitamin with folic acid can have a major impact on improving the health of babies and children in Utah (see information on folic acid at http://www.cdc.gov/ncbddd/folicacid/index.html). Tracking neural tube defect occurrence is crucial in planning, carrying out, and assessing folic acid programs to reduce preventable cases. Tracking is also critical for those planning for the care of affected children.

Neural Tube Defects: Prevalence of all NTDs by Maternal Race/Ethnicity, Utah, 1994-2008

Data Source

Utah Birth Defect Network

Definition

Number of cases of neural tube defects per 10,000 births. Neural tube defects include spina bifida, anencephaly, and encephalocele.

Numerator

Number of cases of neural tube defects among live births and fetal deaths among women residing in Utah.

Denominator

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

Healthy People Objective :


How Are We Doing?

The Utah Birth Defect Network (UBDN) has prospectively tracked neural tube defects since 1994. This report is based on 547 affected cases that occurred among over 700,000 births from 1994 through 2008. During this period, neural tube defects occurred in 1 in 1,315 births (rate, 7.6 per 10,000 births). This figure represents a minimum estimate, as the count does not include affected pregnancies that are miscarried before 20 weeks' gestation. Occurrence rates decreased by half from 1994 to 1999 (see graph). After 1999, time trends have been variable. Specifically, occurrence rates appear to have risen temporarily from 1999 through 2001 and then steadily increased since 2003. Variation by race and ethnicity is difficult to assess with precision because of the relatively few births among some groups. Current findings include higher rates of neural tube defects among Hispanics and American Indian/Native Alaskan, intermediate among Whites, and lowest among the Asian/Pacific Islander group (see graph), although further tracking is needed to determine if these differences are real. The UBDN also tracked time trends by race and ethnicity (see graph). Currently most affected babies occur among Whites (78%) and Hispanics (18%). Although folic acid use is relatively higher among women in Utah compared to other parts of the United States, as of 2008 over half of Utah women of childbearing age still do not use folic acid daily. This suggests that a considerable additional fraction of cases of neural tube defects could be prevented through education and awareness programs. Such prevention will benefit families and the state by improving health and decreasing personal, family, and societal burden for these severe conditions.

How Do We Compare With the U.S.?

It is difficult to compare rates with other parts of the U.S. because of variations in the methods and effectiveness in tracking neural tube defects. Rates in Utah are similar to those observed by the Metropolitan Atlanta Registry of the Centers for Disease Control and Prevention (CDC).

What Is Being Done?

Since 1994, activities of the UDOH Utah Birth Defects Network (UBDN) related to neural tube defects have expanded in partnership with local and national organizations including the March of Dimes and the U.S. Centers for Disease Control and Prevention (CDC). Activities of the UBDN include: 1) tracking neural tube defects rates across the state and in different population groups, 2) promoting and evaluating folic acid education among women and health care providers to increase the daily use of folic acid supplements among Utah women, and 3) searching for further clues on causes. Specific services for families of affected children from birth to three years of age are provided by the Utah Early Intervention Program, located within the Bureau of Children with Special Health Care Needs, Utah Department of Health. Services include child health assessment; service coordination among providers, programs, and agencies; occupational and physical therapy; and speech and language therapy. Information on these services is available at http://www.utahbabywatch.org. A further resource is the Utah Collaborative Medical Home, which is a project designed to provide information, tools, and resources for primary care physicians to enhance their ability to care for children with special health care needs. Information on the Utah Collaborative Medical Home is available at their web site: http://www.medhomeportal.org.

Available Services

Spina Bifida Clinic Primary Children's Medical Center 100 N. Mario Capecchi Drive Salt Lake City, Utah 84113 801-662-1675 http://utahspinabifida.org/ The Spina Bifida Clinic, located in Primary Children's Medical Center, provides services and support for children with spina bifida and their families. Children with Special Health Care Needs 44 North 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. State Early Intervention Services 44 North Mario Capecchi Drive PO Box 144720 Salt Lake City, Utah 84114-4720 801-584-8226 800-961-4226 http://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.
Page Content Updated On 09/10/2010, Published on 09/13/2010
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Content updated: Tue, 28 Jul 2015 19:46:07 MDT