As more children lead productive lives after being born with a heart defect, many organizations have increased their congenital heart defect research to help fund further advancements.
About Congenital Heart Defects
Heart defects are the most common of all birth defects with one in every 100 children in America being born with some form of heart problem every year. These range from abnormal holes between the heart's chambers to more serious conditions like hypoplastic left heart syndrome (HLHS), where most of the left ventricle is missing. Some of these children need close monitoring to ensure that the condition doesn't get worse. In more serious circumstances like HLHS, a series of major surgeries are needed to allow the body to work with the malformed heart. For these children, ongoing testing, medication, and follow-up surgical interventions become a standard way of life.
The cause of congenital heart defects is still a mystery. Some researchers have found a possible link in genetic factors while others believe it may be an environmental issue. There may also be a hereditary cause since some families have more than one child in their family with a heart defect. But in many cases, there is no known reason for the heart problem.
Congenital heart defect research generally falls into two categories-prevention and treatment. While some research is being done to prevent heart defects from occurring at all, other studies are being conducted to treat heart defects. These new treatment options include improved medication, new surgical methods, and repairs like valve replacements and stents. Previously, there were only a few treatment options for heart defects since the mortality rate was so high. But as children with heart problems are living longer and healthier lives, more attention is being placed on congenital heart defect research.
Groups for Congenital Heart Defect Research
There are many non-profit organizations and charities that raise funds for congenital heart defect research, including:
- Olivia's Heart Fund: started by a mom who lost her daughter to HLHS in 2008, Olivia's Heart Fund raises money to support research and awareness of heart defects.
- The Children's Heart Foundation: Based in Illinois, this foundation provides grants to researchers who are working on children's heart defects. Thirty-five projects have been funded by the program to date.
- The Zachary Brooks CHD Endowment: Funded through donations during the annual American Heart Association's Heart Walks, this endowment puts 100 percent of donations toward congenital heart defect research.
- American Heart Association: Although the Heart Association's mission supports cardiovascular diseases and stroke, funds donated to the AHA's Legacy of Life Endowment will provide ongoing support for congenital heart defects.
Before donating to any non-profit, it's a good idea to check out their guidelines and to make sure that the money you donate will be going to CHD research.
While funding continues, there are several major research projects currently being conducted into congenital heart defects.
The National Heart, Lung, and Blood Institute has recently announced a six-year program involving at least five research centers that will look for possible genetic causes of congenital heart defects. The $25 million program hopes to identify possible genetic factors that could lead to heart defects.
Another project that was funded by the National Heart, Lung, and Blood Institute looks to develop pediatric heart-assist devices. The $5 million endeavor is being carried out at the Penn State College of Medicine and continues a project started in 1986. Since many of the current heart-assist devices are too large to be used in children, the development of a pump specifically for smaller patients will have a great impact on the lives of children with heart defects.
Lobbying for Congenital Heart Defect Research
Each year in February, hundreds of supporters head to Washington, D.C., to ask their lawmakers for increased funding for congenital heart defect research. Although heart defects affect more children than Down's syndrome and spina bifida, there is a general lack of funding and public knowledge about the problem. The lobbyists are hoping to change that by having a day in February officially recognized as CHD Day and by increasing the amount of funding that goes toward heart defect research.