July 30, 2012 -- Children born with heart defects need early screening for developmental disorders, according to new recommendations from the American Heart Association.
But a new review of research from 1966 to 2011 suggests certain types of heart defects may be more problematic in the long run.
Heart defects affect about nine out of every 1,000 babies born in the U.S., and about 85% of these infants survive into adulthood.
Researchers say children born with heart defects are more likely to have difficulty in school, behavior issues, poor social skills, or language and speech problems because of a variety of developmental disorders affecting their brain function.
But early screening and prompt treatment can help.
"If we identify developmental problems earlier, we're going to help prevent issues from coming up in school that prevent these children from achieving their fullest potential," researcher Bradley S. Marino, MD, associate professor of pediatrics at the University of Cincinnati College of Medicine, says in a news release.
"In the past, we were happy if they survived. Now, we want them to survive and thrive," says Marino.
Who's at Risk?
In the review, researchers looked at the prevalence of developmental disorders in children born with heart defects.
The results link children born with heart defects or heart disease with an increased risk of developmental disorders, disabilities, or developmental delays.
But for the first time, researchers were able to identify certain types of heart birth defects that were more likely to lead to developmental disorders than others.
These defects were generally more serious, such as those requiring open heart surgery as an infant or that cause the child to appear bluish due to poor circulation.
Other risk factors for developmental disorders include having a combination of heart disease at birth and one of the following:
- Premature birth
- Developmental delays as a baby
- Suspected genetic abnormality or syndrome
- A history of mechanical support to help the heart
- Heart transplantation
- A history of cardiopulmonary resuscitation (CPR)
- Prolonged hospitalization during the child's heart care
- Seizures related to heart surgery
- Brain abnormalities seen in brain images
What to Do
"If your child fits the high-risk criteria, go to the physician who coordinates your child's care to obtain evaluations for neurodevelopmental, psychosocial, and behavioral and emotional issues," says Marino.
"Your child's cardiologist should continue to handle the physical issues related to your child's heart disease, but other caregivers need to join your child's 'medical home' to ensure the best ongoing, comprehensive care," he says.
If a child is considered at high risk for developmental disorders, researchers recommend the following:
- Establish a "medical home," usually the child's primary care provider, to coordinate care between various specialists.
- At each visit to the "medical home" the risk of developmental disorders should be reassessed because the risk level may change over time.
- Periodic re-evaluation is recommended throughout infancy and childhood at 12 to 24 months, 3 to 5 years, and 11 to 12 years of age.
- Early intervention may be recommended even before a developmental disorder is formally diagnosed.
- Higher-education or vocational counseling may help high-risk children when they become young adults.
Treatment for developmental disorders in children born with heart defects may include special education classes; tutoring; and psychological, physical, occupational, and speech therapies.
The recommendations, published in Circulation, were also approved by the American Academy of Pediatrics.
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