Supporting families with kids affected by congenital heart defects
Since 2014, The Pulga's Heart Project has been making an effort to bring joy and a little bit of comfort to the heart families at the hospital after their own personal battle with CHD.
What is CHD?
Congenital Heart Defects are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).
Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
There are an estimated 2,000,000 CHD survivors in the United States.
The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.
More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
Our reason to help...
Julia our brave daughter was born with a complex CHD: Hypoplastic Left Heart Syndrome.
During her short life she underwent two open heart surgeries, two catheterizations, a tummy surgery to place a feeding tube in order to feed her.
"I really don't know what happened, when we lost our battle, in this case our daughter’s battle, all the strength and energy that we used in our daughter’s journey, now needs to emerge in helping others. And it's a strong desire that heals our minds and souls."