You can be Ryan’s Hope

Ryan is heading for surgery tomorrow (Thursday, August 27) – he’s in our thoughts and he’s the newest Cardiac Kid in the blogroll. Ryan is fighting through multiple problems – he has Pentalogy of Cantrell, Hypoplastic Right Heart Syndrome, and Ectopia cordis.

Ectopia cordis is an extremely rare heart defect – some feel that it is not a defect itself, but rather a part of Pentalogy of Cantrell – that means the heart is not in the usual location. It could be in several different places, but usually the heart is located outside of the chest wall. You’re reading that right: Ryan’s damaged, fragile heart is actually located outside of his body. Here’s a video of Ryan, with his little heart just doing its job. (I’ve asked, and received permission to link to the video. Sensitive readers may need to exercise caution.)

And tomorrow, not only Ryan is going to undergo the Bi-Directional Glenn Shunt, and the surgeons will also try to correct the Ectopia cordis. They won’t try to shove the heart back down into the chest cavity, but rather build a layer of tissue and skin around it. Hopefully it will begin to grow, and later, when it is time for his Fontan, the surgeons will add more skin and tissue and perhaps even a bone graft. The idea is get his body to grow around his heart.

So go over to Ryan’s blog, read his story, and add your kind thoughts to the growing collection for this young man.

UPDATE 1, 0802 Eastern (1302 GMT): Ryan’s surgery is scheduled to begin at 0830 Eastern Time (1330 Greenwich Mean Time). They expect it to be a long operation, 4 to 6 hours. Keep checking his web page for updates.

Update 2, 1353 Eastern Time ( 1853 GMT): Ryan is out of surgery! It went well; the only disappointment is the surgeons did not attempt to correct the Ectopia cordis. They felt that it would be better for Ryan to have a little time to adjust to the Glenn first. Depending on how he does, they may attempt that as early as next week.


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