Little Logan is adorable! I first came across him when his mum Camilla posted a picture of him in a tiger onesie on Facebook. The cuteness! Camilla and I have been in touch over the last year – she’s asked me for advice around how to handle people’s questions about Logan’s appearance. I’m so glad she’s shared their story here for the Ichthyosis Awareness Month Blog Project.
Logan has Non Bullous Congenital Ichthyosis form Erythroderma (nbCIE).
Meet Camilla and Logan.
I gave birth to my precious son five weeks too early. My water broke in the middle of the night, I was induced the next morning, and Logan was born that evening as a collodian baby. A collodian baby has a thick, parchment-like membrane coating the entire body that is so thick that it cracks in spots. Logan looked like he had cuts on his back, stomach, and joint areas.
When Logan was born I briefly held my baby in my arms, knew something was wrong, but was too afraid to ask questions. My husband, my opposite, immediately started asking what was wrong with his questions falling on deaf ears. My baby was then taken away to the NICU were I wasn’t allowed to hold him again for days. Two days later was the first time we heard the word “ichthyosis” and learned of the genetic skin condition.
The first few days in the NICU were spent with tears and prayers. I remember thinking Logan would be deformed with the pulled back eyes, fish-like mouth, and sausage fingers resulting from the collodian membrane. It felt like a miracle as his beautiful eyes, nose, and other features appeared normal as the membrane peeled off. We came home from the hospital on a bewildering Thanksgiving Day.
The next several months were uneventful, if you call applying Aquaphor routinely uneventful, and his skin seemed under control giving us hope that the ichthyosis would be mild. That ended when he developed a fever, his skin dried out enough to tear from the tightness, and his skin was in pain for the first time. Of course, I thought this was my fault because I didn’t wake Logan up for the evening Aquaphor application because he was sleeping so hard from the fever. Since then, Logan’s skin has been moderate and causes him occasional pain which will always make my heart break.
Logan’s short stature combined with his extremely red skin initially led to a Nethertons diagnosis which has since been ruled out. We now believe he has the nbCIE type of ichthyosis. I have spent and continue to spend lots of time reading about ichthyosis, taking with other ichthyosis parents, and my sub-conscious is always thinking about the skin condition. We are a happy family and ichthyosis has not ruined our lives, but I find it interesting how the condition continually occupies my mind.
I was with my sister at the park and she asked me how I deal with all the looks and stares. I told her that I don’t notice them anymore. I believe my toddler is most handsome young man at the park with the best personality ever. I believe the redness may catch a stranger’s eye, but it’s the pep in his step and the squeal of excitement accompanied by an “I did it!” from walking up a ladder that turns the stranger’s glimpse into a stare.
Today, Logan is contagiously happy with a kind spirit. He now gives me the hope I was trying to get from a miracle cream that he will lead a normal life. I know that he’ll get his feeling hurt from comments made about his appearance, but we will deal with that when it comes. For now, I am Logan’s proud mommy!”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.