Founders and Advisory Board

Congenital Heart Defects and Learning Disabilities

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%

American Heart Association Fact Sheet Even the American Heart Association, on its Fact Sheet, mentions that ". . . Some children with congenital heart disease have developmental delay or other learning difficulties."

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. They state: ". . . 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."

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.

This parent-friendly free download from the Heart and Stroke Foundation is designed to help parents of children growing up with a congenital heart defect. The title of this is: Heart & Soul: Your Guide to Congenital Heart Defects. This states: ". . . Children with complex heart defects or who have been cyanotic for a long time may be smaller and lighter than their peers,and may have learning disabilities.(See Cyanosis-Blueness of the Skin,page 2-11)

Current Opinion in Cardiology 2005 Mar;20(2):94-9 states:
"Central nervous system outcomes in children with complex congenital heart disease." By Wernovsky G, Shillingford AJ, Gaynor JW. -- this is written by a doctor who edited a book on Hypoplastic Left Heart Syndrome (Wernovsky). In the abstract, it is stated, ". . . RECENT FINDINGS: As the number of survivors of surgery for complex congenital heart disease continues to rise, it is recognized that there is an increased incidence of adverse neurological outcomes in the survivors. In particular, a pattern similar to that seen in premature infants is emerging, including learning disabilities, behavioral abnormalities, inattention and hyperactivity."

Functional Limitations in Young Children With Congenital Heart Defects After Cardiac Surgery
Pediatrics Vol. 108 No. 6 December 2001, pp. 1325-1331
Catherine Limperopoulos, OT, MSc, Annette Majnemer, OT, PhD, Michael I. Shevell, MD, CM, FRCP(C), Bernard Rosenblatt, MD, CM, FRCP(C), Charles Rohlicek, MD, CM, PhD, FRCP(C), Christo Tchervenkov, MD, CM, FRCS(C) and H.Z. Darwish, MD, FRCP(C)
From the introduction: ". . . Overall, existing evidence would suggest that global developmental deficits are common across the developmental spectrum, particularly in gross and fine motor skills, language, reasoning, and behavioral difficulties.6,7,8,9,10 Educational difficulties and a need for special classroom placement or individualized instruction as a result of learning disabilities and attentional problems also seem to be common in this high-risk population.11,12,13 It is critical to define developmental deficits across all domains to target which rehabilitation professionals are needed for specific interventional purposes. However, the extent and nature of neurodevelopmental deficits/impairments and concomitant functional implications in this population requires additional definition."

The American Heart Association, Inc. Clinical Cardiology: New Frontiers published Challenges Posed by Adults With Repaired Congenital Heart Disease by Joseph K. Perloff, MD; Carole A. Warnes, MD
From the article . . . "Neurological Sequelae
The incidence of neurological sequelae has declined substantially as surgical techniques have improved. Only a small percentage of patients sustain permanent neurological sequelae (seizures, motor disorders) or disorders of higher cortical function (mental retardation, learning disabilities). However, total circulatory arrest in infancy may be followed by impaired motor coordination, and the impact of cardiopulmonary bypass on the developmental outcome of children who undergo open heart surgery for closure of secundum atrial septal defect compares unfavorably with the developmental outcome after device closure. Cognitive ability after a Fontan operation is lower than that of the general population."