Hi, my name is Magda and I'm new to the group. We are living in
Kent, England. My daughter is now 4 months old and she was born
with PRS and a cleft palate. She is doing very well with her
feeding and breathing and doesn't use any aids except for the sqeezy
cleft palate bottle.
I am quite worried about related syndromes though and have asked to
be seen by a genetisist. We have an appointment this coming Tuesday
and I'm really trying to equip myself with as much info as
possible! I strongly suspect theat she might have Sticklers - she
does have a rather round face and very small nose. I'm also from a
family with extremely bad eyesight and I myself have eye problems
and some degree of low muscle tone.
Can anyone give me some pointers as to what to ask and say on
Tuesday? I really hope that she will be tested, as I'm worried sick
and will feel so much better once I know for certain whether she's
got Sticklers or not.
Many thanks!