Welcome! As fae as I know, there are 2 parents of young children with HI and 2 or 3 parents of grown children. They don't come on much, but I do see them on facebook. Find the group "friends of ichthyosis" and I'll hook you up with them. How old is your baby, and have you found FIRST yet?
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.

email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"