Will my neice grow out of her pierre robin sequence?

Question

My neice was born last night =) and she has pierre robin sequence. I guess theres a hole in the roof of her mouth, and she does have a veryy small chin...but its not EXTREMELY severe. I was looking at pictures on google of children with tubes and such coming out of there throat. will this happen to my neice? will her chin grow out as she gets older and look the same as any other little girl? they are giving her surgery to fix the cleft pallette, but not until shes 10 months.

Answer 1

My cousins daughter was born one year ago TODAY with the same disorder!!  She went through a few surgeries and spent time (2-3 months) in the hospital, but is now a healthy and vibrant 1 year old.

They first did a surgery around 1.5-2 months.  The put spacers in her jaw for it to grow properly.  There were metal rods sticking out of her jaws in 4 places where they adjusted them.  She went home a few weeks after that surgery.

She could only sleep on her belly, if she was on her back, her tongue would flop back in her throat blocking her breathing.  She went home with an apnea monitor.

At 5 months, they did another minor surgery on her jaw/chin area with no complications.

At 9 months, they did the surgery to fix the cleft palette.  

You can't even see where her scars from surgery were, she healed just fine.  She still does have a small chin and jaw, but doctors think she will grow into it.  She will probably need one more surgery.

When she came home, she needed to drink out of special bottles due to the hole in the palette.  If she drank too much or too fast, she would spit it up through her nose.  She needed to be off the bottle before the surgery for the palette, otherwise the sucking would open the stitches.

We are glad she made it through all the problems.  I wish the best for your neice.  Any other questions, please email me!!