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Neurodevelopmental Issues
The good news is that many children with congenital heart defects are now surviving into adulthood; however, researchers are finding that many children with congenital heart defects are showing some developmental and neurodevelopmental issues. For a rather technical, but informative, article on neurodevelopmental issues click here.

Parents of children with congenital heart defects who suspect developmental problems or delays should have their child screened as early as possible (for example, if a child has speech issues or fails to reach developmental milestones). The child’s pediatrician or a hospital social worker should be able to provide information on services available in your location. Another good place to get information is your State Department of Health. The screening and services may vary from state-to-state and by locality. Services are often provided through early intervention programs (sometimes also called Birth-to-Three programs) and/or the public school system.

Educational Issues
Some children with congenital heart defects will have educational issues. Parents and caregivers may want to familiarize themselves with federal laws regarding special education. Wrightslaw has easy-to-read information on Individualized Education Plans (IEP’s). More information can be found on the U.S. Department of Education website.

Children with disabilities may need a 504 plan (if an IEP is not already in place).

More information can be found on the U.S. Department of Education website. More information can be found on some of the children’s hospital websites. For example, Children’s Hospital of Philadelphia and Children’s Hospital of Boston.

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“Mended Little Hearts allows parents to support each other and new families in a way that only another congenital heart defect family understands, giving families a sense of hope and security. When my son was finally home from the hospital, I was terrified, scared and depressed. When MLH came into my life, I finally felt a sense of security—knowing that I wasn't alone and other parents felt the same way I did.”
- Jaime Olsen, Mom to Tyler
Chicago, Illinois
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