Hi there....I gave birth 6/14/04 to ggb triplets--the girls being identical--I wrote about cleft palates but earlier this week Meghan (the more severe cleft palate) was diagnosed with PR Syndrome--it involves a receding chin and her tongue is held back which causes breathing and eating difficulites. We are trying the haberman but she is not happy about it..she is fed with a nasal tube (NG?)tube. My question is...does naybody else have this syndrome and withthe posts i have read about oral aversion--if she is "forced" to eat ( prying inthe haberman--by the nurses) will she likely develop an eating aversion--the nurses seem to focus on the NOW--eat!! but i am concerend about the later and would rather her tube feed for a awhile--she is currently only 36 weeks gestation ( born at 31 weeks).
Any input would be appreciated.
Thanks..
Anne

I have absolutely NO expereince with PR syndrome,this is actually the first time I've ever heard of it. But,I did want to say, I think you are right to be concerned with the future and Meghan's eating. I went thru something similar with my DD, Abby. She was tube fed and refused anything oral- getting her to bottle feed was a nightmare! And I wanted to breastfeed her... Anyway, if the hospital isn't already doing it, I would ask for a consult with occupational therapy. They can help with her feeding issues and any sensory/oral issues-perhaps even speech therapy could too. The nurses are concerned with the medical issues and getting those calories into the babies. They aren't concerned about her sensitivities. HTH

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Anne,

I don't know much about Pierre Robin Sequence, I know a few kids on the trach boards (my DD has a trach) have PRS. My DD, due to the trach had feeding difficulties, and we dealt with a small amount of oral aversion with her. If I were in your position, I would talk to the Neos, and ask, if you and DH were proven sufficient in the care and management of a NG tube, it would be possible to NOT froce your DD to eat PO. The possibility is there, if needed, to take a baby home with a NG tube for supplementation with a 'less proficient' eater. Talk to the head Neo and disscuss your concerns. You are the first line in standing up for what you think your babies
need.

Below are a couple sites taht may be helpful to you...

http://www.pierrerobin.org/
Check the table of contents, then click on feeding for the above site...

http://www.cleftline.org/publications/pierreRobin.htm

I hope all goes well for you, and congrats on your trio!

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

Anne, one more - here is a spot I found expressly about feeding issues...

http://www.widesmiles.org/cleftlinks/feeding.html

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

I have a friend who had a singleton born with this. I don't know much about his after care, but I can get you in touch with her in you want. Her little boy is 3yo now and is doing fine.

Jen
Mom to
Spencer 6yo
Seville, Olivia, Noah 3yo
See my family at http://www.raisingmultiples.com/DavisFamily.html

Jen
Mom to Spencer 7yo
Seville, Olivia, Noah 4yo
Check out our family at http://www.raisingmultiples.com/DavisFamily.html