Young children who were born with certain birth defects such as cleft lip or palate, and spina bifida are at an increased risk of experiencing abuse and neglect before the page of two, say researchers at the University of Texas Health Science Center at Houston (UTHealth). Their findings were announced on Dec. 10, 2015, were published in the December issue of the journal Pediatrics.
Researchers compared data on children without birth defects to children with cleft lip and/or palate, or with spina bifida. For children with cleft lip and/or palate, the risk increased by 40 percent, while the risk of children with spina bifida increased by 58 percent. The rates were much higher during the first year of life. Children with Down syndrome, however, were not at a higher risk for maltreatment than children who did not have birth defects.
“A baby with Down syndrome develops just like any other baby unless they have another congenital defect,” said Bethanie Van Horne, Dr.P.H., the assistant director of state initiatives at the Children’s Learning Institute at UTHealth. “When they start missing developmental milestones is when the intellectual impairments associated with Down syndrome become more apparent. Additionally, they typically do not have the same level of medical complexity as babies with cleft lip with or without cleft palate and spina bifida, who likely have a lot of medical needs and complications. If you’ve just given birth and have to deal with a lot more complexity and care, it’s hard.”
Cleft lip and/or cleft palate occur when a lips or mouth of a fetus do not form properly during pregnancy. Spina bifida is a neural tube defect that has a negative effect on the spine and is usually recognized at birth. These children have physical disabilities that range from mild to severe, depending on the location on the spine of the defect.
The research was based on several sources that collected data from 2002 to 2011: the Texas Birth Defects Registry; birth and death records from the Texas Department of State Health Services Vital Statistics Unit; and information on child maltreatment from Texas Department of Family and Protective Services. Texas defines maltreatment as a refusal to assume parental responsibility, physical, emotional, and/or sexual abuse, neglect, medical neglect, abandonment, and neglectful supervision.
Children whose abuse was substantiated were at a three to six times higher risk of medical neglect among those with birth defects in comparison to the unaffected group. Van Horne speculates that the complexity of their medical conditions may contribute to rates of medical neglect versus other types of neglect.
Family factors such as poverty may also heighten the risk of maltreatment for both children with birth defects and those without these disabilities. Abuse and neglect rates increase when their mothers had more children, used Medicaid, or had less than a high school education.
“Physicians and medical personnel have to understand that the risk for abuse varies by specific disability,” said Van Horne. “In general, when children are born with medical complexities like a birth defect, we need to be really supportive of those families. If we can identify them early and start services, we can help them understand what’s to come. A lot of providers do this, but we can do more.”