My daughter was born with Pierre Robin Syndrome - Please he

[jeske4@triton.net]

My daughter was born on July 2, 1999 with Pierre Robin
Syndrome. Feedings have become extremely difficult for us. I am
extremely frustrated and would appreciate any advise. If anyone
can provide me with more information on Pierre-Robin Syndrome,
that would be appreciated also. Thanks for your support.

[AN EXPERIENCED MOM]

PLEASE TRY A LAMBS NIPPLE. THEY CAN BE PURCHASED AT FEED STORES, AND PERHAPS SOME DRUG STORES. THEY ARE LARGER THAN NORMAL AND THE FLUID BYPASSES THE CLEFT. HOPE THIS HELPS/

[Anonymous]

Hi


My daughter was born in September of 1998, and diagnosed with PRS at birth. So far we have had some problems with feeding that we have overcome. If we can be any help please email me on stymanr@mpx.com.au


We would only be too happy to share our knowledge and experiences with you and help you succeed in feeding your daugher.


Bella

[stymanr@mpx.com.au]

Hi


My daughter was born in September of 1998, and diagnosed with PRS at birth. So far we have had some problems with feeding that we have overcome. If we can be any help please email me on stymanr@mpx.com.au


We would only be too happy to share our knowledge and experiences with you and help you succeed in feeding your daugher.


Bella

[Mandy Shore]

Hi... I can understand how you are feeling... my son Jason was born on Oct.1, 99 with Pierre Robin and it has been a very difficult time as well. Have you tried using the Haberman Feeder? Please try it.... it is great! Hope things go better for you.... take care and good luck.

[jane]

my daughter natasha was born september 28 1999 with prs. she was in hospital for 5 weeks and it was very difficult trying to feed her and learning how to insert her nasal gastric tube. it was a terribly emotional time. if anyone would like to write with advice etc. please contact janeandnatasha@hotmail.com
she is the most lovely and happy baby and will be having her cleft repair operation this october which is a big worry for me.

[wendyward@bigpond.com.au]

MY SON BRADLEY WHO WAS BORN 18/11/96 HAS PIERRE ROBIN SYNDROME. BRADLEY IS NOW 4 YEARS OLD AND GETTING READY TO GO TO SCHOOL NEXT YEAR.
MY ADVISE TO YOU IS FEED TO HOW YOUR CHILD IS COMFORTABLE AND LEARN AS MUCH AS YOU CAN ABOUT THIS SYNDROME SO YOU CAN TALK TO THE DOCTORS ON THEIR LEVELS AND STAND UP FOR HOW YOU FEEL.
IT DOES GET EASIER, BRADLEY HAS HAD 4 MAJOR OPERATIONS AND STILL BEATHES WITH CPAP MACHINE BUT HE IS A WONDERFUL HAPPY AND HEALTHY BOY.....
GOOD LUCK