A Ray of Sunshine via the Phone

So, we just got off the phone with CHOP's Fetal Heart Program's super-helpful Coordinator Denise Donaghue and super-knowledgeable Program Director Dr. Jack Rychik... and they gave us more HOPE. Despite the fact of an abnormally elongated Tricuspid Valve, Dr. Rychik was optimistic that since the valve has NO LEAKAGE as of yet, there is little probablility that it will develop any leakage (or at least enough so that it endangers the functionality of Macsen's heart). This statement was based on the 250+ cases (over the past 4 years) of HLHS experience that these guys have to draw upon. Granted, NO OTHER previous case entailed an elongated Tricuspid. But still. Everything hinges on this valve doing all the work. And while they roughly estimate 50%, he said he feels it's probably higher. >SIGH OF RELIEF<

So, no two HLHS circumstances are the same. Ours is just a little more unusual than most. OK, than ALL. Macsen means the Greatest... I guess he had to be the most unique fetus with HLHS. What a superstar. I swear, he's had more pics taken IN UTERO than both our other kids in the last 5 years combined. (I may be exaggerating, but we're counting in the hundreds now.)

He will, of course, have to be monitored throughout his life to make sure there is no significant leakage. The doctor told us of a recent case where leakage occurred in the teenage years. Well, if he makes it through all this, a few check-ups are totally worth it. I will thank God for his life every drive to and from those hospital visits. And also every day he wakes up... and goes to bed... and every time I see him. Pretty much on a constant basis.

Here's a diagram from the CHOP website that gives a general view of typical HLHS features. Macsen has all of these and then some. His left ventricle (LV) is squished pancake flat. The mitral valve (LA to LV) is almost a solid wall. And the Aortic Valve (LV to Aorta) is non-existent.
Next step, another viewing on June 7th @ SHH in Pensacola. Praying for no leakage starting.


Here's the full diagram with explanations of the 3 open-heart surgeries.
http://www.chop.edu/img/cardiac-center/hlhs-surgery-three-stages.html