What’s With Her Skin?

Now that she is 5 weeks old, Geneva’s skin is looking great.  All she has is a little bit of peeling skin on her scalp at this point, which has been hanging there for a couple of weeks.  Her skin condition, apparent in some previous pictures I posted, was no surprise to us since Carina and Lia presented the same way in their first few weeks of life.  Doctors don’t really know what it is, they’ve never really seen it before, however at this point we know not to worry since this is our third time dealing with it and Carina and Lia’s skin healed just fine.  Doctors at Boston Children’s Hospital always seem to be in awe and come to look at this weird, undiagnosed genetic thing going on.  When GiGi was born, four different dermatologists from Children’s came to take a look.  This time they had no advice for us and basically said “the parents know what they’re doing at this point”.  Dr. Skotko mentioned that he laughed when he was reading the report which stated something like “defer to the parents for advise”.  We knew that aquaphor four times a day and lubricating artificial tears were the prescription.  Geneva’s skin was actually the most mild of the three girls.  One doctor (I can’t remember if it was for Carina or Lia) labeled a diagnosis as “self healing congenital ichthyosis”.  I recently found out that with the diagnosis of ichthyosis we get a lifetime supply of aquaphor, but I’m not sure how to go about doing that so I need to figure that out.  Exciting!  Carina’s skin made such an impression on the dermatologist at Children’s at the time that he apparently ran into our pediatrician years later and asked about her.

So what happens?  When the girls are born they have a white film that cannot be removed or wiped away around their mouth and other mucus membranes.  Then within the first few hours of life their skin turns bright red like a sunburn.  Beginning day 2 the skin starts to peel.  Some areas become very tight, like around the eyes and the baby has a hard time closing the lids.  This is the reason for the artificial tears.  It’s hard to look at sometimes, but it doesn’t appear that the baby is uncomfortable.  Here are some pictures of Geneva’s progression:

Minutes after birth
Day 2, red skin
Day 3, peeling begins
Day 4
Day 5
Day 6
Day 9, peeling on face is only above eyes at this point
Day 10, mostly clear on trunk; forehead has peeling
Day 11
Day 28, still a little left on the scalp

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