Hello,

I have a 5 months old baby with PRS. I live in Europe in a country
where having a genetist in the bunch of doctors seing your child is
not common. When asking the specialists currently treating my little
daughter (plastic-maxilofacial surgeon, pediatrician, etc)they do not
feel the need of looking at this until she will enter into a
reproductive age...

I also have other children, one of them with high astigmatism in one
eye that appeared 2 years ago - him being 4. As more than a third of
the PRS babies apparently have also Sticklers, I would like to know
if in your country it is common to diagnose/discart Stickers for PRS
children, as well as what is the name of the genetic test done, its
soundability and your advice on whether I should visit a genetist or
just "wait and see".

I was born myself with a soft cleft palate (no other known cases in
the family)and we do have some joint problems, scoliosis, low to
medium myopia and astigmatism in some members of my husband very
large family but no syndrome diagnosed.

Is it common for the people in this group, not to have a clear
diagnose of SS until a baby with PRS or cleft palate is born? Does
the syndrome hide often?

Many thanks in advance for your help,
Elena.