Children with Congenital Heart Defects and Their Use of Special Educational Services

A guest post by Coleen Boyle, PhD, MSHyg
Centers for Disease Control and Prevention

Teacher and studentsSome new research gives us encouraging information showing that children living with birth defects are getting the services they need. Specifically, several of my colleagues and I found that children with congenital heart defects (CHDs) received special education services more often than children without birth defects.

This is important news, because earlier studies have shown us that children with some types of CHDs have a greater chance of having problems with brain development and function as compared to children without birth defects. Knowing that children with CHDs may benefit from—and are receiving—special education services is reassuring. Special education services are those specifically designed to meet the unique needs of a child with a disability.

So what do these findings mean? They demonstrate the importance of developmental screening—short tests usually conducted by a child’s doctor to determine if their basic learning skills are where they should be—for all children with CHDs to ensure they receive the services they need. The American Academy of Pediatrics recommends all children receive these screenings at 9, 18 and 24 or 30 months of age during well visits with the doctor. Screenings may include observing, talking with, or playing with the child to see how he or she plays, speaks, behaves, and moves.

CHDs are heart problems that occur before birth and are the most common type of birth defect in the United States. About 1% or nearly 40,000 births each year are affected by CHDs. Of these, about 1 in 4 is considered a critical CHD, in which surgery or other procedures are needed within the baby’s first year.

Some of the specific findings from the study show that
• Children with CHDs and no other birth defect were 50% more likely to receive special education services than those children without birth defects.
• This increased use of special education services occurred in children with critical CHDs and in children with noncritical CHD.

For this study, we looked at information about children born with a CHD from 1982 to 2004 in metropolitan Atlanta; we also examined a similar sample of newborns without a birth defect. After linking information about these children to special education services they later received (from 1992 to 2012), we determined that children with CHDs more often received those services than children without birth defects.

The Centers for Disease Control and Prevention (CDC) and our partners not only conduct research such as this to identify the scope of the issue and how it is being addressed, we also
• Fund programs and conduct research to help us determine where and when birth defects occur and whom they affect;
• Track CHDs among teens and adults to learn more about their health issues and needs; and
• Collaborate with partners such as the March of Dimes to provide information to families, experts, and organizations to address CHDs.

We at CDC and in particular the National Center on Birth Defects and Developmental Disabilities (NCBDDD) along with our partners, including March of Dimes, strive to help ensure individuals born with these conditions get the care they need throughout their lives.

To learn more read the Key Findings document and the research article abstract.

dr-coleen-boyleThe March of Dimes wishes to thank Dr. Coleen Boyle for this guest post. Dr. Boyle is the Director of NCBDDD and has authored or co-authored more than 100 peer-reviewed and other scientific publications.

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