08 May 2015

Ichthyosis Awareness Month: Kylie and Lincoln’s Story. “The child he is, and the parents we have become, is in part, because of what we have overcome and discovered in our journey as a family”

Kylie, Lincoln’s Mum, shares what it was like in the very beginning. Learning that her son was born with X-linked Ichthyosis, the struggles they had in hospital and how they have come to deal with it in their everyday lives.

Kylie hopes that by sharing their story that they will be able help other people and provide a little education for those who are only just learning about Ichthyosis. They are coming to the Australian Ichthyosis Meet tomorrow!

Meet Kylie and Lincoln.

Lincoln was born at 2:40am on June 6, 2013 and after a few quiet minutes from the delivery team we were told that he needed to go straight to the NICU as there was something wrong with his temperature and skin. I got one quick cuddle before he was taken away from me.

Over the blur that was the information overload of the next 24 hours; between being transported to the Royal Children’s Hospital in Melbourne, being discharged from hospital less than twelve hours after giving birth and seeing our tiny little man lying in his humidicrib, we were told that Lincoln had been born with a collodion membrane and until that broke down we were not going to know his condition and the severity of it.

After a dream pregnancy with no issues and no health complications, my husband and I were distraught seeing our poor little boy who looked in immense pain (although we were repeatedly reassured he was not) and to find out another 24 hours later he had contracted bacterial meningitis we were in a medical daze.
Dr Google was a mistake we made very quickly, and regretted just as quickly, as only horror stories seem to make for good reading on the internet, never the inspiring feel good stories. Finding light relief in making stupid jokes, including one about being cousins, when asked by the genetics team if we were related may seem inappropriate to some people, but humour was the only thing we had to hold onto at the time to keep us sane.

After what was the longest month of our lives, we were sent home from RCH, dermeze, cetaphil, hydrozole, ridiculously expensive nappy cream and bath oil in hand.

Over the following few months and numerous appointments he was diagnosed with x-linked ichthyosis, and what appears to be a mild case at that.

Lincoln suffers with dry skin, thickening on his palm and feet and itchiness, which is treated with bath oil and moisturiser, and occasional eczema which clears up with one or two treatments of advantan. Although the poor little guy does also have red cheeks most days which occasionally look blistered or burned, drawing looks of horror toward me from onlookers thinking I should be reported to DHS, or the standard 'poor dear he must be hot/teething/have excemza' comments from well-meaning personal space intruders.

He is an amazing little boy has been through a lot in his little time in this world (including a skin related bacterial infection landing him back in hospital for a week), but we wouldn't change a thing. The child he is, and the parents we have become, is in part, because of what we have overcome and discovered in our journey as a family.

We are grateful for the chance to participate in this inaugural Ichthyosis Meet in May as the awareness and information relating to ichthyosis and related conditions is so low. Not one person I have spoken to about Lincoln's condition had heard of it before. Because of the lack of awareness, I think that the severity of a condition relating to your skin is under appreciated by people who lack understanding due to the fact that there is no education for these conditions.

As new parents of an affected child, finding reading material and a community to speak to was difficult, if not almost impossible. We thought we were alone. Thankfully with social media being so prevalent these days, forums like these assist families unbelievably.
Lincoln loves going to the Zoo and squeals with delight at the lions and meerkats so I know he'll enjoy the day, and Nigel and I are looking forward to speaking to other parents who we finally don't have to explain the ins and outs of his skin condition to (what a relief that will be!), and getting advice on how to deal with things as our son gets older. (Like not sweating, crusty scalp issues, when the time comes that he won't want to bathe daily, moisturise daily and just be a stinky boy and how we deal with it, handling heat, advice on any other products to use, helping him deal with inevitable bullying at school etc etc!!).

We are also looking forward to (if they are attending) seeing the beautiful Matilda from Tasmania again. The day after we were told the RCH sees maybe one collodion case a year, the second one in a few days arrived when Matilda was admitted.

Thank you to Carly for all of your hard work and effort to give people with these conditions a voice and inspiring the children who are affected to see that it doesn't have to rule your life, it's just another interesting part of it."

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.

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This post was edited by The Life of Clare. Do check her out. 

1 comment:

  1. Kylie i enjoyed reading your story it sounds similar to ours, not knowing is the hardest and you cant help but google what the doctors tell you what they think it is. we didn't get diagnoses for about 4months but we kind of knew what it was from googling as it was identical to what was going on with our little man. i was at the meet on saturday i'm sorry i didnt get to talk to you but i do remember seeing Lincoln and thought he was very cute. All the best with the management of Lincoln skin.


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