Pierre Robin Baby with Reflux/Trach Tube/G-Tube

[cbneb@aol.com]

My daughter is 8 weeks old - she had a trach and g-tube put in
a little over three weeks ago. She is our first child and we do
not have much of a support system(all family is far away). Is
there anyone with a child who has or had similiar challenges -
I'ld love to chat!

[andrea_showalter@yahoo.co]

My daughter was born with PRS in May of 98. She doesn't have a
g-tube but does have a trach. If you have any questions, you are
welcome to e-mail me at andrea_showalter@yahoo.com

[jrslmscshs]

hello, i have any 8 month old baby who has pierre-robin. she
also has a trach, g-tube and is on o2 with a bipap ventolator.
she has developmental delays. but she is wonderful.i would love
to have contact with someone also.thanks.

[Neil Newman]

I have read your article after doing a web search, we have
just had a baby girl on 29/4 and diagnosed with PRS, we are
devistated and are not sure what its all about yet, so if you
have a chance email us to chat

[c_lhermitte@compuserve.co]

our daughter (second child after a first girl born without
problem) was born with PRS 18 months ago ; she had a trache from
1.5 month old to 14 month old, and a g-tube when she was 8 months
old ; she still has the g-tube but we dont use it since april
1999, that is quite recently ; we are trying to feed her
naturally ; she is 9 kilogrammes and has been putting off weight
ever since (4 months) we have begun reducing her tube feeding ;
she had a surgery against her reflux in the same time when she
had the surgery for the g-tube ; so she can't vomit ; but at
least 4 times we have seen her extremely ill at ease (so were we,
ready to go to the hospital) trying hard to vomit but eventually
swallowing back everything ; her soft palate cleft was fixed when
she was 1 year old ; she is beautiful and charming, has always
seemed so to me from her birth but a little more day after day (I
thought the same with our first girl !!!) ; presently our focus
is on trying to help her put on weight ; she doesn't walk alone
yet, but will do if helped with a hand at least ; but we do not
really worry about walking, it will come. Some day we'll take
time to write more, there is so much more to say and other
parents'witnessing on the internet has helped us more than any
information we may have had off line ; none of our medical
friends or family never cared to find information for us ; too
scared maybe or just did not care enough is more probable ... Bon
courage (I'm French)

[sely@ibm.net]

My name is LeeAnn and my son was diagnosed with GE reflux last
week. As my husband and I are living far from family, and this is
our first child. I would love to hear how things have turned out
for you and your little girl. Currently we are sleep deprived,
totally driven by his needs, and I have definite cabin fever. How
did you survive???