Pierre Robin Sequence
This area of our website is dedicated to Pierre Robin Sequence and related conditions. If you would like to contribute to the content of this page with stories, photographs or medical articles please send them to sue.carroll@clapa.com. See below for more information…..
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Marianne Ryan’s story
Marianne's baby, Jessica was born in 2010 with a cleft palate and Pierre Robin Sequence.
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Parent Support
The most important thing that a parent contact can offer is personal knowledge of the difficulties faced by new parents.
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General Information for Parents
Want to know more about Pierre Robin Sequence?
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About Pierre Robin Sequence
Brief introduction to PRS
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Stickler Syndrome
By Wendy Hughes, Founder of the Stickler Syndrome Support Group
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Pierre Robin Sequence
Article by curtesy of Brian Sommerlad, Consultant Plastic Surgeon, North Thames Cleft Service
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Feeding Information
Feeding information for babies born with Pierre Robin Sequence
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Lisa’s Story
Lisa Bogan shares her story.
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Benjamin’s Story
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Tamsin’s Story
Tamsin Hawkins shares her story.
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Daniel’s Story
Lisa Harvey tells her story
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Charlotte’s Story
One families experience of Pierre Robin Sequence
Frequently Asked Questions
- When will the palate be repaired?
- How long will my baby have to stay in hospital?
- How long will the hospital stay be after the palate repair?
- How long will the operation take?
- Will my babies chin come forward? How long will it take?
- Will my baby be able to feed independently or will tube feeding be necessay?
- What is the best position for the baby when sleeping and travelling?
- Are there car seats for Pierre Robin babies?
