Complete Indicator Report of Birth Defects: Gastroschisis
DefinitionNumber of cases of gastroschisis per 10,000 births.
NumeratorNumber of cases of gastroschisis among live births and fetal deaths among women residing in Utah.
DenominatorNumber of live births and stillbirths among women residing in Utah.
Why Is This Important?Over the past 30 years, Utah has seen a ten-fold increase in gastroschisis. The rise in gastroschisis rates has also been reported in other states and countries. The causes of this increase and dramatic difference by maternal age are unknown, but the rapid rise suggests that environmental factors play a major role. Young maternal age, less than 20 years of age, is the strongest and most consistent risk factor for gastroschisis. The reason for this is not understood. A recent study, conducted by Utah investigators, suggests that genitourinary infections (i.e., urinary tract and sexually transmitted infections) in early pregnancy increase the risk for gastroschisis.
Babies with gastroschisis are born with their intestines, and sometimes other abdominal organs, outside the abdomen. Babies with gastroschisis are more likely to be born prematurely and to be small for gestational age. Neonatal morbidity and mortality with gastroschisis is primarily dependent upon the condition of the bowel at delivery. Though current survival rates have improved to 90% in developed countries, long term complications among some infants remain a challenge. The associated costs to care for these children will continue to rise as the number of babies born with gastroschisis increase.
Burden of disease and medical costs associated with gastroschisis are substantial. Just the direct medical costs to treat an infant with gastroschisis were estimated to be over $83,000 (Utah Department of Health, Medicaid Data). For the estimated 25 children born with these conditions every year in Utah, their direct medical costs would therefore be in the order of $2.1 million. This figure, though high, is only partial. For example, it does not include cost for special services if they are needed after the initial repair.
Tracking gastroschisis occurrence in Utah women is crucial in assessing this birth defect in Utah 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.
How Are We Doing?The Utah Birth Defect Network (UBDN) began tracking rates of gastrsochisis in Utah in 1997. The current report is based on 244 affected births born from 1997 through 2007 and reported to the registry.
The rate of gastroschisis for the period 1997 through 2007 in Utah overall was 1 in 2,212 births (or, equivalently, 4.5 affected newborns per 10,000 births). Prevalence by year is shown in Figure 1 which demonstrates a slight increase during the past six years. The rate among women less than 20 years of age was 1 in 570 births. In Utah, 80% of the mothers giving birth to a baby with gastroschisis were under 25 years of age compared to 40% of the mothers giving birth to healthy infants (1997-2007).
Based on these data, the UBDN estimates that, on average, around 25 affected children are born in Utah every year.
Rates of gastroschisis were lowest among non-Hispanic Whites (Figure 2). The rates were highest among Native American and Black Utahns, but such estimates are based on few affected children, leading to wide confidence intervals that overlap with those of the other race/ethnic groups (Figure 2). These small numbers of affected births result in unstable rate estimates.
Since tracking of gastroschisis began in Utah in 1997, rates have shown minor yearly variations with no obvious time trend (Figure 1).
How Do We Compare With U.S.?Rates of gastroschisis in Utah are higher than national rates of 1 in 2,500 babies suggested by the Centers of Disease Control and Prevention (www.cdc.gov). The reasons for such higher rates in Utah are unclear, and studies are ongoing in Utah and elsewhere to understand its basis.
What Is Being Done?Since 1997, the UDOH Utah Birth Defects Network (UBDN) has been tracking rates of gastroschisis, evaluating their origin, and, more recently, researching their causes.
Current activities of the UBDN include 1) tracking rates across the state and in different population groups and; 2) working with the National Birth Defects Prevention Study to study environmental risk factors. Researchers in Utah are also planning to study infections and inflammation during pregnancy to improve our understanding of potential risk factors.
Available ServicesExpectant parents of infants diagnosed with gastroschisis by prenatal ultrasound can work with their obstetric provider, or the perinatologist, to visit with the pediatric surgeons and neonatologists at Primary Children's Medical Center to discuss postnatal care. These parents are also invited to look at pictures of babies before and after surgical correction.
Children with Special Health Care Needs
44 North Medical Drive
PO Box 144610
Salt Lake City,UT 84114-4610
Phone (801) 584-8284
Toll Free (800) 829-8200
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 North Medical Drive
PO Box 144720
Salt Lake City, Utah 84114-4720
Phone (801) 584-8226
Toll Free (800) 961-4226
Statewide Early Intervention (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.
Related Relevant Population Characteristics Indicators:
Graphical Data Views
Data SourcesUtah Birth Defect Network.
Data SourcesUtah Birth Defect Network.
References and Community ResourcesUtah Birth Defect Network
Parent to Parent/Utah Parent Center
2290 East 4500 South, Suite 110
Salt Lake City, Utah 84117-4428
Toll Free (800) 468-1160 voice or TDD
Espanol (801) 272-1067
Family to Family/ARC
455 East 200 South, Suite 202
Salt Lake City, Utah 84111
Phone (801) 364-5060
More Resources and LinksEvidence-based community health improvement ideas and interventions may be found at the following sites:
Additional indicator data by state and county may be found on these Websites:
Medical literature can be queried at the PubMed website.
For an on-line medical dictionary, click on this Dictionary link.
Page Content Updated On 04/23/2009, Published on 07/20/2012