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Wednesday, October 6, 2010

What is a Collodian Baby?

Be sure to visit on Friday morning...I'll have a very special skincare review and giveaway being sponsored by Virginia Soaps and Scents, soaps and creams handmade by a homeschooling family.

ichthyosis awareness button 2010Peter was a collodian baby. I won't post his newborn pics here, because, frankly, they are a little scary (I try to keep this blog G-rated for the kiddos who might be climbing over your shoulder).


His entire body was encased in an inflexible skin that was so tight, it constricted his face, his ears, his little fingers and toes. He looked like he was wrapped in plastic wrap.

The skin on his face was so tight he could not express milk from a breast or close his mouth around a bottle nipple initially. He never successfully breastfed. Or, I should say, he nursed, but he was never able to efficiently express milk. He used bottles with preemie nipples for more than 3 months.

As the collodian membrane started to peel over the first few weeks, he developeds constricting bands around his fingers and arms that would cut into his tender skin. He had a lot of discomfort and a high risk for infection.

Every diaper change was followed up by slathering heavy petroleum-based ointments over his entire body. He hated it. And it let us know about. And if you think the typical infant is slippery in the bath, try handling one who's just been greased up with a Vaseline-like ointment!

But, eventually the membrane came completely off and after awhile, his true skin started to emerge. It changes from day-to-day, season-to-season, year-to-year. The skin is the largest organ we have, and everything in our lives affects it, from the weather to our diet.

Peter's condition is actually pretty mild compared to some I have seen documented. No, I have never met another person with Lamellar Ichthyosis, can you believe it? It's very rare, some estimates putting it at about 1 in 200,000. Fewer than 50 babies are born with it in the U.S. each year. How's that for an exclusive club?

FIRST (Foundation for Ichthyosis and Related Skin Types) has posted interviews with some of their members here.

Caution: I have not viewed all of the videos, but would advise previewing before allowing your children to see. Same goes for the FIRST website...many of the photos there describing the various forms of Ichthyosis are really hard to look at.

3 comments:

  1. Gosh, poor guy!! That had to be a scary and stressful time for your family! Sometimes God's reasons are not understood at all. I'm glad he had a wonderful mama to take care of him.

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  2. We have always felt very blessed to have Peter in our lives. His babyhood seems so far away, and yet I know that it helped to shape who he is and who he will become.

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  3. God is soo good to have given you all such a great little fella...I just love the glint in his eyes...all boy and well...You would know what ALL else is wrapped up in that little man!! LOL He's a doll...all your kiddos are~Sending you a hug~great info for awareness! Thanks for sharing!

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