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Re: Pierre Robin
Posted by Vicky on 6/12/2010, 3:01 am, in reply to "Pierre Robin"
Hi, yes it is sad and you feel alone and frightened but your child will look no different to any other child when he grows up. I remember being told my son had PRS and I just cried for days and felt really low for a few months. This is a normal response and you are not alone! My son has PRS and stickler syndrome but he is a really happy confident little boy (now 5 years old). When he was born he had no chin and breathing/feeding problems. He chin grew and looked 'normal' around about his 1st birthday. The habenman feeder is wonderful and allowed us to stop tube feeding him, I would recommend you try the haberman feeder. Your son may not have any further complications but if he does, you just cope with them and your bond with your child gets so strong. Try to stay positive and enjoy your baby.
: I live in sweden and just had a boy whit
: pierre robin and "gomspalt" i dont
: remember what its name is in english! Iam
: very sad and just want to have someone to
: talk too....
: Love Mikaela
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