by Today is world heart day.
Before AJ was born, I honestly did not realize how many babies were born with heart defects.
I knew it was a thing. But I thought it was a rare thing.
Except it’s not.
Nearly 1 in 100 babies (about 1 percent or 40,000 babies) is born with a heart defect in the United States each year. About 1 in 4 babies born with a heart defect (about 25 percent) has a critical CHD. Some heart defects don’t need treatment or can be treated easily. But others, like some critical CHDs, may need surgeries over several years.
March of Dimes
1 in 100.
My graduating class in high school had nearly 100 people in it.
If I had a 1 in 100 chance of winning the lottery, I’d play it all the time.
Those are not the odds that I expected, and when I heard it the first time I was shocked.
Why aren’t more people talking about this?
Maybe it’s because not all heart defects require extensive treatment.
Maybe it’s because the scars can be hidden, and most kids live largely ‘normal’ lives from what the outside world can see.
But underneath the surface, it’s not normal.
Even for “simpler” CHDs there are follow ups and medications.
Tests and exams.
Fears and worries.
So. Many. Fears and worries…
A lot of the funds raised through heart organizations go to education and prevention of heart disease. Funding for congenital heart defects is harder to come by.
For example – Dr. Rodefield has been working on The Fontan Blood Pump, a device that would be used in kids like AJ — that essentially does the work of the missing side of the heart. This could potentially be a big deal for AJ and other kids like him.
Typically we choose organizations that support families who are struggling with CHDs. We will likely never stop supporting those organizations. They have done a ton for us and other families and they are incredibly needed.
This year though, we wanted to do something different. The Children’s Heart Foundation is one of the few organizations that supports research for CHDs – including the Fontan Blood Pump. As a result, it is the charity we’ve chosen to support this year.
If you are looking for a place to make a donation, know that there are hundreds of heart families who would benefit from the research being funded.
