On January 30, 2006, March of Dimes
issued the following press release:
“Hidden Toll of Dying and Disabled Children; A Comprehensive Global Analysis
Identifies Trends and Interventions”.
The report
noted the following five common birth defects of genetic or partially genetic
origin combined accounted for about 26 percent of all such birth defects in
2001:
- Congenital heart defects (1,040,865 births)
- Neural tube defects (323,904 births)
- Hemoglobin disorders thalassemia and sickle cell disease (307,897 births)
- Down syndrome (217,293 births)
- G6PD deficiency (177,032 births)
Congenital heart defects were greater than the remaining four common birth
defects combined.
Current estimates suggest there are 1.5 million people in the United States
living with a congenital heart defect. Recent advancements in surgical
techniques and medicine have increased survival rates for children born with
complex congenital heart defects. 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.
The National Institutes of Health
CRISP database provides historical data on all National Institutes of Health
medical research from 1972 to present. A recent query using the following key
words for years 2003-2006 revealed the following:
- Pediatric and Cancer and Outcomes = 128 grants funded
- Pediatric and AIDS and Outcomes = 99 grants funded
- Type I Diabetes and Outcomes = 76 grants funded
- Sickle Cell Disease and Outcomes = 53 grants funded
- Pediatric and Traumatic and Brain and Injury and Outcomes = 29 grants funded
- Pediatric and Heart + Defects and Outcomes = 7 grants funded
Given that heart defects are the leading cause of birth defects and require
lifelong follow-up and medical management the results of the query reflect how
underserved this population is. The following three organizations represent the
primary source of research funds for this population.
- March of Dimes mission and research funds are dedicated to the
prevention of birth defects. They do not fund research to address outcomes or
improve quality of life.
- American Heart Association mission is the prevention of acquired heart
disease and the majority of research funds are directed towards the adult
population.
- National Institutes of Health, the most likely source of funding, has
allocated the least amount of research dollars to address the outcomes of the
leading cause of birth defects.
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the same. Together we WILL make a difference!
