DEBRA WILLIAMSON - AMELIE DISASTER

[Guest guest]

Lesley,

I have written Debra's name in the subject line in the hopes she might see

this message as she has two children with CHARGE and I believe one of them has

had the operation where they disconnect the stomach & the esophagus

(esophagogastric dissociation).

Regarding the dissociation: from what I've read, they disconnect the stomach

from the esophagus, route the esophagus to the jejeunum (small bowel) for saliva

to travel down and feeding is still done through the stomach as it is still

connected to the bowels. The name most closely associated with the

esophagogastric dissociation is a man from England, actually. His name is A.

Bianchi from the Royal Manchester Children's Hospital in England.

According to this web site:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=9\

314245 & dopt=Abstract

" Reversal is planned when the child has achieved sufficient physical growth

and accepts a substantial oral intake " - so it sounds like it can be reversed.

It also states that " esophagogastric dissociation with Roux-en-Y

esophagojejunostomy and a nonrefluxing feeding gastrostomy is a useful temporary

or permanent 'rescue' procedure " , so this might not be a lifetime thing; just

until something else will work for Amelie.

I have also found the following article which may also be of interest/help to

you:

http://www.sodbrennen-welt.de/science/1997/1997_9314245.htm

Lesley, keep us updated as you can.

Much love,

Weir

Home: lisaweir@...

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