While this is hardly an exhaustive review of the literature, here is some information from websites and journal articles about congenital heart defects and learning disabilities. I think there should be enough supportive evidence here for you to get some help for your child. The best thing you could do, if your school district is being resistent to helping your child, is for you to get a letter from your child's doctors (pediatrician, pediatric cardiologist and cardiothoracic surgeon) stating that your child has had open-heart surgery and is at risk for learning disabilities. Here's what I found (Part I):
http://www.chw.org/display/PPF/DocID/30866/router.asp -- this children’s hospital website mentions that learning disabilities are non-cardiac problems which may arise and need attention
http://www.savinglittlehearts.com/research.php -- this site is much more specific regarding research of children with CHDs and learning disabilities. “. . . Research over the last decade suggests that even when the surgical outcome is ideal, children with complex CHD have above average rates of learning disabilities, ADD/ADHD, psychosocial maladjustment and coordination problems.
A 1997 National Institutes of Health (NIH) funded study from Children’s Hospital in San Diego, CA published the following:
Percent of population estimated to have a learning disability as defined by California State Education Code:
- Total Population – 5%
- Acyanotic CHD - 12%
- Cyanotic CHD – 44%
There has been no further funding to investigate this on a larger scale or to develop a means to track and identify children who have a nearly 50% chance of having a learning disability.
On my website: http://www.congenitalheartdefects.com/typesofCHD.html, I have listed some of the more common heart defects and which ones have learning disabilities and mental retardation associated with them. (Sorry, you’ll have to scroll through the different defects to see which ones have been tagged as having learning disabilities associated with them – Williams Syndrome jumped out at me)
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4134696.pdf. -- this is an extensive report published in the United Kingdom in 2006. The title is: Adults with Congenital Heart Defects: A Commissioning Guide for Services for Young People and Grown Ups with Congenital Heart Disease (GUCH). There are several place in this extensive document which discusses the need for special services for those with a heart defect and a learning disability. Specifically, they mention the number of children born with Down’s Syndrome who have a heart defect (40%) and how many of those children have learning disabilities.
Even the American Heart Association, on its Fact Sheet, mentions that “. . . Some children with congenital heart disease have developmental delay or other learning difficulties.”
http://heart.health.ivillage.com/congenitalheartdisease/congenitalheart9.cfm -- this webpage on Congenital Heart Defects is edited by 2 doctors: Fred Weiss, M.D., FAAP, FACC and Robert I. Hamby, M.D., FACC, FACP
“. . . There is still evidence that children with CHD are more likely to struggle with learning disabilities or neurological problems, but researchers say that the gap in these areas between CHD and healthy children is narrowing.”
http://eurheartj.oxfordjournals.org/cgi/content/full/24/7/673 -- European Heart Journal, “Psychosocial functioning of the adult with congenital heart disease: a 20–33 years follow-up” (published in 2003) had some specific information on a longitudinal study of children born over 20 years ago with a CHD. They state:
“. . . Table 1 shows that 27% of the patient sample had followed some sort of special education in the past. Of these patients, 85% attended schools for learning-disabled or mentally handicapped children and 15% for chronically ill children. The proportions of patients with a history of special education were significantly higher in the diagnostic categoriestetralogy of Fallot (33% (22–44)) and transposition of the great arteries (40% (27–53)) than in the atrial septal defect group (13% (6–20)).”
(Note from Anna) It appears, from more current research, that these numbers are not reflective of children born in the 1990s or after the year 2000 due to the advances in medical technology and medical procedures currently used on children with congenital heart defects today.