1 in 100

This being CHD Awareness week, I had plans on posting stories of CHD on this blog but, my computer is being a retard and not letting me on blogger. I have no idea why. I can get on here on Paul’s computer but not mine. I’ve scanned it for viruses and come up with nothing.

Any who… Reading these stories of CHD makes me realize just how lucky we (David) are. Most of these stories are not as good as David’s. David does have what’s called Shones Complex. It is what it says… its complex. You’d think with something that is ‘complex’ he would have more issues then he does. All these stories, babies were in ICU for a long time, David’s first surgery he was in ICU a week. The 2nd was two days I think, and this last one he was in for less than 24 hours.

These babies/toddlers, here in the hospital for weeks to months. David’s longest stay in the hospital was 15 days. Five days after birth in the NICU, seven days in the PICU, and then three days in general care. He skipped moderate care. Most of the stories I read, that doesn’t happen.

These babies/toddlers come home on numerous medications, on oxygen, with feeding tubes, and stay on them for long periods of time. We came home with Lasix, once a day then taken off the medication shortly after. David should be off his Lasix this time at his one month post opp appointment. No feeding tube, no oxygen, just one medication for a short time.

David does have some developmental delays like most kids with CHD. Though not severe, he will function as a normal person but will always need a little extra help with learning. Some of these kids with CHD are not so lucky. A LOT of them die as a result of CHD. Some have surgery and never recover. Some recover but have such awful lasting problems they die suddenly at home. Some of them require a heart transplant.

This is a BIRTH DEFECT. It is the most common birth defect and kills more children then childhood cancer, yet funding for research is zero compared to cancer. For the record I do NOT have anything against raising money for childhood cancer. It’s a sad and unfortunate thing and I believe we are super close to a cure but CHD needs more funding and research.

Why do I believe CHD is over looked? Because it’s the unseen birth defect. Most children with CHD appear healthy on the outside, other than the oxygen on their nose. They are clothed so you don’t see the scar down their chest, or the rib cage that us bulged up on one side because it didn’t heal back together just quite right. You don’t see the pneumonia that CHD children tend to get in the colder months.

You don’t see the fact that my five year old son is too scared to look at the scar on his chest.

You don’t generally see CHD but ask around, I guarantee you know someone with a CHD.

1 in 100 babies is born with a heart defect. David is 1 in 100.