Welcome

Elizabeth - posted on 10/12/2012

Hello, my name is Elizabeth. My daughter was also born with Pierre-Robin Syndrome. She has a hard and soft cleft palate, a set back jaw and tongue. She was born on march 14th and weighed 5 lbs 15 oz. I had a lot of problems getting her to gain weight. We are finally over 14 pounds, but we are almost 7 months old. We were put on Similiac Special care 24 calories. I use the haberman bottle with her, but will be starting special cups next month. She is eating baby cereal and baby food great, but seems to sneeze a lot. The hospital found the cleft palate when they were checking her out after I held her for a little while.

Shaunna - posted on 05/15/2012

Hi. We just adopted a baby girl with PRS. We went to our first cleft clinic yesterday. Our LO is 8 weeks tomorrow and weighs a little over 7 lb, so everyone there is distressed due to her tiny size. We should get results of generics in 3 weeks. Did anyone else have difficulty with their LO gaining weight?? She can only eat about 2-2.5 oz at a time. Also, they are running genetic tests to see if there are any other problems. At this time it looks like 18 mos til cleft repair and possible mandibular distraction at 2 ish dependent in genetic results I am thrilled to have others to talk to about PRS!!!

Meghan - posted on 10/23/2011

Hi my name is Meghan. My son was born in august with Pierre Robin Syndrome. He had a tongue lip adhesion done when he was 5 days old. His airway is fine now. No real problems with that. He is 11 weeks old today. We are feeding him with the haberman nipple. Gaining weight slowly but gaining. Nervous about when we start experimenting with solids with the cleft palate and his tongue tied down. It would be nice to have people to talk to that have gone through similar experiences.
Meghan

Sheena - posted on 01/24/2011

Hello :o)
My youngest is 7 months old and may possibly have PRS. He has the wide u-shaped cleft and micrognathia. We are blessed with no breathing or tongue-retraction issues. He had ear tubes put in at 3 months and he will be having the palate repair in May of this year. Eeeek!
We dont know anyone else with this so i hope to get to know some people who can share stories and provide advice. :o)

April - posted on 12/05/2010

You're very welcome

Karen - posted on 12/05/2010

My daughter is 15 now, and beautiful as ever! She was also born with Pierre-Robin and had her first surgery when she was 10 days old. About the only thing we struggle with now is braces! Palate repaired twice, trach and g-gutton out!
Thanks for the group!
Karen