This is my baby lover boy, Gabriel.
He smiles with his whole face and gives the world's best hugs and thinks he is the funniest kid around.
And he is missing half of his heart.
I suppose missing isn't exactly accurate.
He has all 4 heart chambers, but the left side of his heart is very, very small. Too small to function. It might as well not even be there.
The technical name for his condition is Hypoplastic Left Heart Syndrome.
As you can imagine, there's a ton of medical jargon that describes what HLHS is and what it means for my sweet boy's future but I'll boil it down for you.
Normal Heart On The Left - HLHS Heart On The Right
1) Tiny Ascending Aorta & Aortic Arch
2) Teeny Tiny Left Ventricle
3) Large Patent Ductus (only source of blood for his body)
4) Atrial Septal Defect (allows blood from the lungs to reach the single ventricle)
It's a defect that renders his left ventricles useless.
They are too small to send the oxygenated blood out from his heart to the rest of his body.
So his right ventricles have to pick up the slack.
It's rare and there is no cure other then a complete heart transplant.
20 years ago, a baby born with HLHS died within a couple of days.
Now babies with HLHS are kept alive with a series of 3 surgeries, called The Norwood Procedures, that reroute oxygenated blood from body to lungs to heart to body using only the right side of the heart.
Gabriel underwent his first open heart surgery just days after being born.
His second was at 3 months old, just one month before he came home to us.
Right now we are in a waiting game as to when he will go back in for his third. It will be any time between now and his 4th birthday.
We go in to see his Cardiologist every 2 to 3 months and they review all of his numbers and evaluate his heart to see when the best time will be.
We aren't exactly sure what his life will be like long term.
The oldest living survivors are only in their early 20's.
At this stage of his life it merely means that he takes a few pills everyday and gets tired faster then other kids his age.
When we first got Gabe I tried to research HLHS and came up with next to nothing. And what I did find was sad and negative and not very hopeful.
But that's not the story I want to tell.
I want to tell about his triumphs.
How well he's doing.
How even with only half a heart, this little boy is living life to the fullest.
January 21, 2010 - Gabe is born!
- First Open Heart Surgery (Norwood Procedure)
- Second Open Heart Surgery (Glenn Procedure)
- Heart Cath