Children with cleft lip or palate and spina bifida at increased risk for abuse

Children born with cleft lip or palate and spina bifida are at an increased risk for abuse before the age of 2, according to researchers from The University of Texas Health Science Center at Houston (UTHealth). The results were published in the December issue of the journal Pediatrics.

In the study, researchers found that compared to children without birth defects the risk of maltreatment in children with cleft lip and/or palate was increased by 40 percent and for children with spina bifida, the risk was increased by 58 percent. These rates were especially high during the first year of life. However, children with Down syndrome were not at an increased risk compared to children with no birth defects.

"A baby with Down syndrome develops just like any other baby unless they have another congenital defect. 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," said Bethanie Van Horne, Dr.P.H., assistant director of state initiatives at UTHealth's Children's Learning Institute. Van Horne conducted the study as part of her dissertation at UTHealth School of Public Health.

Cleft lip and cleft palate are birth defects that occur when a baby's lip or mouth do not form properly during pregnancy. A baby can have a cleft lip, a cleft palate, or both a cleft lip and cleft palate. Spina bifida is a neural tube defect that affects the spine and is usually apparent at birth. Children with spina bifida have physical impairments ranging from mild to severe depending where on the spine the opening is located.

The researchers drew data from several sources from 2002 to 2011: birth and death records from the Texas Department of State Health Services Vital Statistics Unit, surveillance of children born with birth defects from the Texas Birth Defects Registry and child maltreatment information from the Texas Department of Family and Protective Services.

In Texas, maltreatment is defined as neglectful supervision, physical abuse, physical neglect, medical neglect, sexual abuse, abandonment, emotional abuse or refusal to assume parental responsibility.

Among children with substantiated abuse, the risk of medical neglect was three to six times higher among all three birth defect groups than in the unaffected group. The complexity of their medical conditions may be a contributing factor for the increased risk of medical neglect versus other forms of neglect, according to Van Horne.

Researchers also studied how family factors affected risk of abuse. Children were more likely to be abused or neglected if their mothers had less than a high school education, had more children and used Medicaid. This was true even if a child did not have a birth defect. Van Horne said that poverty was likely the main factor in this finding.

"Physicians and medical personnel have to understand that the risk for abuse varies by specific disability. 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," said Van Horne.