There are several parents here and involved with FIRST that have children with HI. Unfortunately, it is the most severe type and continues to have around a 50% mortality rate at birth. Children that survive the newborn period usually do well, but it is a lifelong struggle to manage the skin no matter how you look at it.
The only surefire way to prevent another child from being born with HI is to undergo IVF/PGD and only implant embryos that are unaffected.
You can also become pregnant the usual way and abort after screening, but that has all sorts of moral and ethical and emotional issues that most people would prefer not to subject themselves to.
HI is a recessive disorder. You have a 1 in 4 chance of having an affected child, a 1/2 chance of having an unaffected carrier and a 1/4 chance of having a child with no mutation copies in their genes.
If you contact FIRST, they can put you in touch with a couple of our HI families. Their new number is 215-997-9400.
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"