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Which advice would you give to someone who has just been diagnosed with Pierre Robin Syndrome?
Advice for the newly diagnosed with Pierre Robin Syndrome, written by people who have lived it. What they wish they had known on day one.
Rightt now the condition probably seems really scary but things will get better. I remember being told this and not believing it, it felt like one thing after the next. Try and talk to people that have children with prs for reassurance, get advice from your cleft team and try not to panic. The jaw comes forward the cleft can be fixed and by the time your child's 2 you won't see many differences with other children their age.
Posted Aug 14, 2017 by Della 1000
I cant give advice to babies haha, but advice to the parent would be, take it one day at a time and make sure you ask and write down all of your questions and talk to people who have also been in this situation on Facebook groups etc. It helps so much
Posted Sep 7, 2017 by Hailey 3200
