Did you know that 1 in 100 children are born with a congenital heart defect? It is the most common birth defect, and a leading cause of birth-defect related deaths worldwide. Sadly, our Matilda is one of these, as is my cousin Sabina, daughter of my dad's brother Rune and his wife Linda, who died at the age of three months 22 years ago.
From the above website:
Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.
Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.
By sharing our experiences and providing information, we hope to raise public awareness about conditions that affect approximately 40,000 babies each year in the United States alone.
It is our sincere hope that efforts to educate the public will result in improved early diagnosis, additional funding for support and educational services, scientific research, and access to quality of care for our children and adults.