hello my name is kristin my daughter has av canal hlhs with a gtube and i was wondering is there ne moms out there with kids with some or all of these issues i dont know ne thing about it i mean the docs tell me some stuff and there is google but it only answers so much ! so if ne moms out there that can help plz contact me here
Congratulations on the birth of your beautiful baby girl!!
Gabe is 10 months old now. His heart is rather complex in mysterious ways, but he is starting to do much better.
I wanted to talk to you about the possibility of you getting an opinion from Children's Hospital of Boston. The reason why I ask, is that in your specific situation (HLHS with AV Canal Defects) there is a surgeon there named Dr. Del Nido who is doing groundbreaking (he's successfully done this over 68 times) staged biventricular repairs on kids with these specific heart issues (and often times they also have downs syndrome).
It is incredible, we didn't know about it (we were originally in Seattle) until a lady contacted us on my blog. We sent our records to Dr Pedro del Nido in Boston, and he said, though Gabe would be hard, it was possible and he had done it before.
He fixed Gabe's ballooned mitral valve and leakiness, extensive valve work, and he has directed bloodflow by closing part of his AV Canal defect towards the left ventricle- which once was about 15 percent of the typical size, is now more than 60 percent of the typical size of a left ventricle. Which means that he now qualifies for a full biventricular repair, that he will have in the next 12 months, most likely.
Gabe is still in Boston recovering, though we are from Idaho. :)
I hope this message finds you and your princess well, she is beautiful.
Gabe had his modified glenn (well really it was a modified 2nd norwood) about the same time he would have had his glenn procedure. He has had a bumpy road, but as I said, his case is more complicated than the typical situation.
We were told by every other hospital that this procedure was impossible, but Dr del Nido is doing incredible things in Boston. I guess that's why it's the number one children's hospital. :)
I hope this can help you in some way. <3