Children born with spina bifida or a cleft lip and/or palate are at an increased risk for abuse before the age of two, according to a new study at the University of Texas Health Science Center at Houston (UTHealth).
The findings show that, compared to healthy children, 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 particularly high during the first year of life.
Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly in the womb. Spina bifida is a neural tube defect that affects the spine and is usually apparent at birth. Babies with spina bifida have physical impairments ranging from mild to severe depending where on the spine the opening is located.
The researchers also looked at the risk for abuse among children with Down syndrome, and found no increase in 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,” said Bethanie Van Horne, Dr.P.H., assistant director of state initiatives at UTHealth’s Children’s Learning Institute.
“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.”
Van Horne conducted the study as part of her dissertation at UTHealth School of Public Health.
For the study, 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 verified 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.
Other factors played a role as well. For example, 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.
The findings are published in the journal Pediatrics.