Born July 24, 2007; diagnosed with HLHS and restricted Atrial septum; completed Norwood procedure 7-30-07 and Glenn procedure on 11-30-07.
What is HLHS? HLHS stands for Hypoplastic Left Heart Syndrome and is a congenital heart defect where the left side of the heart, usually the left ventricle, is underdeveloped. The left ventricle is tasked with pumping blood to the body, whereas the right ventricle pumps blood to the lungs for oxidation. This condition is usually caught at the 20 week ultrasound, as was our case, and a game plan is put into place for treatment just after birth.
The Wiki page is found here: http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome
Elliot had an additional diagnosis of having a restricted atrial septum, often called Restricted Septal Defect or RSD. The problem with this secondary diagnosis is that the HLHS repair procedure counts on passive blood flow to the lungs, which is dependent on having low pressure in the lungs. Having RSD creates a high pressure environment in the lungs which can nullify the effectiveness of the 3-stage HLHS procedure. The treatment for RSD usually calls for immediate surgery upon birth to open up the atrial septum to allow blood flow to the lungs and body.
So for Elliot's birth, that's what we were prepared for; birth, then immediate heart surgery to open the atrial septum, followed by the first of his 3 surgeries to repair HLHS. All the while not knowing if the RSD would even allow his lungs to function properly after the repair.
Where are we now? Elliot's doing great, getting big and developing normally. He's still on oxygen right now, about 1/2 liter 24 hours a day, and still gets most of his nutrition through a feeding tube. However, he's a happy baby...and we're happy to have him.
Glad you mentioned that it was backward, because I thought you were a little crazy, making that jumble into 'elliot' :)
Photobooth?
Posted by: Danielle | May 20, 2008 at 05:11 PM
Yes Danielle, you guessed it. The photobooth flip around. I should've caught it, but didn't and then was too lazy to fix it. But it says Elliot, scouts honor!
Posted by: Jabulani Jonny | May 23, 2008 at 10:45 PM