Friday, September 01, 2006

I want to share something with you from the Saving Little Hearts website. Pretty dry reading, but it does explain just why I feel so strongly about raising awareness in the CHD arena.

Congenital Heart Defect Research Spending

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 Childrenā€™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 ā€“ 5%
- Acyanotic CHD - 12%
- Cyanotic CHD ā€“ 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

posted by Erin @ 1:48 PM   7 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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