Pierre Robin Syndrome

[Anonymous]

We have a beautiful 1 month old son who was diagnosed with
Piere Robin after turning blue when we attempted to feed him in
the hospital. He has a wide cleft palate and is fed through a
gastronomy tube. He breathes beautifully in a prone position but
his breathing becomes very labored when on his back. My husband
and I are first time parents and would appreciate any tips you
may have. Changing clothes and diapers seems like a race against
time sometimes though he has never changed colors. We would love
to hear how other parents have combatted the challenges of these
postional breathing difficulties. Thanks. cstrasel@aol.com

[Greg R]

We are in just about the same boat. Our daughter is now two
days old. We met with a Geneticist, expect to see an
ear/nose/throat man this week. We belong to an HMO in Northern
CA. They mentioned lots of the stuff I saw on the opening pages
here. He mentioned surgery sometime after 2 months. A
pediatrician said the chin/jaw would catch up with the rest of
her face (Growth wise). I'm curious as to what treatment
reccomendations you are receiving? I guess we'll be learning a
lot about this in the near future. If you'd like to email back
& forth to exchange info, we're at sodaman@pacbell.net

[mazimono]

I just read your letter on our website. You may have read our
story on this website (SMILES--Theodoros). I am concerned that
your baby is turning blue. Theo never did and never required
oxygen, but he had a tracheotomy at 1 month of age and his jaw
grew out enough to have the trach removed at 6 months of age. He
also had his cleft palate repaired at 4 days old. After the trach
he was able to eat normally and never had a gastrostomy tube.
Theo is now 23 months old and the only visible sign of our ordeal
is a trach scar.



I would be happy to talk with you if you need any advice or
just want to talk to someone who has been through a similar
experience. My husband created this website in order to help
others. Please don't hesitate to call me. I am now a stay-at-home
mom. Our number is (757) 827-6473. My e-mail is:
maryann@digitalimageslc.com

[bellngr@hotmail.com]

I just gave birth to a boy with PRS on 12-18-98. Our main
concern right now is his eating. He becomes fatigued so easily
due to his breathing. We are adding a powder supplement to my
breast milk to increase the calories. Does anyone have anyother
suggestions or ideas? Feedings are such a chore for our son. Any
help would be great! Grace

[Andrea]

My daughter was born on May 22 with PRS as well. Her biggest
problem was staying awake to eat. At the hospital they wanted her
eat 2oz every 3 hours, she was unalbe to do this. She was only
bottle fed and was given 24 cal formula. I started feeding her on
demand and that helped. It was slow going though. I fed her every
hour to hour in half, we were able to avoid her having to have a
feeding tube. After about 6 weeks home it started to streach out
to a few more hours. Now at 7mos she is sleeping 8-10 hours at
night.

[lisa]

my daughter julia was born 9-3-98. i had a normal pregnancy
and delivery. right away my ob noticed she had a cleft palate.
doctors came from the nicu and looked at her and explained to my
husband and i what we had to face in the coming months. they did
not see any other problems so they sent us on to the maternity
ward. there i noticed she was having a very difficult time with
breathing. i mentioned it a few times and they would take her
away and check her pulse ox. it was normal the first 2 times
until the 3rd one and they noticed she was changing color so they
sent her down to the nicu. there she had more problems. she was
diagnosed with the pierre robin syndrom. was on oxygen for a few
days and during feeds when she came home. our pediatrician
advised us to put her on a home monitor while she is sleeping and
aslo lay her on her belly as much as possible. when we diapered
we also moved as quickly as possble. now she is 5 months old and
has been taken off the monitor and oxygen. she is doing
wonderful. sometimes in her crib we find her sleeping on her back
with no breathing problems. we even let her play that way. in
time things have become so much better. they just need to grow
some and gain control of their own body. if you have anymore
questions or concerns you can email me. lmo1118@aol.com

[Glenn]

Our Daughter was born by susarean.They diagnosed it straight
away and she was transfered to the childrens hospital.She was
only on oxegen over night but was tub fed.She was in hospital for
4 week came home with tub feeding but we would start her on a
squease bottle the when she got to tide we would tub the rest.She
had calary supplement in her formular.She came of the tub at
about 8 weeks. She didn't cry for about the first 3 months of her
life. We just fed her every 4 hours she never cried for a
feed,only when the doctor gave her a jab and that was only just
one cry.Has anyone had this expereance of no crying. She has some
other problems also.She has one kidney, some problem with her
eyes with some pressure biuld up, she has had some problems with
her balance.Has anyother children got some of these problem. She
is now 28 months and is no saying much at all.Only mum if she
whats her really bad.She doesn't chat away much at all. She had
her cleft repaired at 14 months.It was a big on them said. We are
in Melbourne Australia. I think thing are done a bit different
time fram her from what I have read on this site.