It isn’t Down syndrome. It isn’t cleft palate. It isn’t spina bifida, or cystic fibrosis, or Tay-Sachs (thank goodness). The No. 1 most common birth defect in the U.S. and in the rest of the world, in fact, is congenital heart defects.
Nearly one in 100 babies is born with a CHD, and they’re the number one cause of birth defect-related deaths. In the U.S., CHDs represent the leading cause of infant death—and yet, you don’t hear a whole lot about them.
I’ve heard way more about Sudden Infant Death Syndrome (SIDS), and imagined way more terrifying scenarios involving an infant and a plastic bag, or an improperly assembled crib, or a tangled umbilical cord, than I have heard about congenital heart defects. It’s hard to keep in mind that some kids are just born with improperly formed hearts, and that even though technology keeps making great strides, there are still heart problems doctors are unable to correct.
The Children’s Heart Foundation was founded after the premature death of one couple’s son. Sam Peterson was born with a congenital heart defect, and he lived eight years. His sudden death on January 3, 1995, prompted his parents, Steve and Betsy Peterson, to establish a foundation dedicated to helping kids with congenital heart defects live fuller, longer lives.
To that end, the CHF has as of 2013 contributed more than $6 million which helped fund 58 different CHD research studies. They have 13 chapters in states across the country. CHF has also published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
Now it has announced that it's accepting proposals from investigators for clinical research projects related to the cause of congenital heart defects and improving methods for their diagnosis, treatment, and prevention. Grants of up to $100,000 per year for a maximum of two years will be awarded for new research in the areas of molecular genetics/biochemistry, devices/procedural research (catheterization and surgical), and long-term care of children with congenital heart defects.
In the past, CHF has favored translational research—getting promising lab results into clinical settings for more thorough testing. We have every reason to believe this RFP will be more of the same. For more information, check out the website.