Re: [MLUG - DISCUSSION] Holt-Oram Syndrome

["Vern Green" <EMAIL:PROTECTED>]

Thank you for the nice words. My pediatrician was trying to say that there was no test for this that would be conclusive, but then agian, this might be the first time he has ever seen this in one of his patients. He did tell me he knew a nurse who had it before.

 

I would like to know for sure, if nothing else to understand why Jeremy had his heart condition. I did not like the explanation that it "just happens sometimes" but that is all I was getting. While it might not make a difference, mentally it is comforting to know where it came from.

 

I am not sure if I told everyone the story, but it was a little rocky there for a while with his heart condition, while Mike may scoff, we prayed hard, had a lot of other people praying hard, and we followed the doctor's advice. Where he had 5 different holes before, one of them was 9 mm in diameter. Now he has 3 holes, and the largest one is now 4 mm in diameter. The cardiologist is saying that he will likely not need surgery now and that he fully expects the holes to close completely.

 

In the end, if all we have to do is deal with his odd little finger and giving him support as he deals with the gawks, points, and laughs about his hand, I feel that our prayers have been answered. At least we may not have to face the dreadful operation that in all practical purposes kills our little boy (stopping his heart), in an attempt to make him better. If it came to that, I would walk into it knowing that it is in God's hands and that he would guide the hands of the surgeons.

 

Anyway, just some ramblings on a lazy afternoon.

On Thu, Mar 13, 2008 at 12:12 PM, Mike Miller <EMAIL:PROTECTED> wrote:

On Thu, 13 Mar 2008, Vern Green wrote:

> I will ask the Doctor on April 5th.

Thanks, Vern, but you have other things to concentrate on.

By the way, you did a great job figuring out the connection of the thumb
to the heart and pulling down the info about Holt-Oram.  Now they need to
confirm the diagnosis and probably do some genetic testing.  I'm not sure
if there are implications for treatment but I think they should do the
testing.  If they don't want to do it (can they justify that?), there
might be research teams that will want to do the work.  It is a rare
disease but some people are studying it and they will probably need more
data.

Mike

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Thanks
F Vernon Green 
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