23 May 2015

Ichthyosis Awareness Month - Catherine and Alfie's story: "The online community have been a fantastic source of information and support to us when we would have been so lost."

Today Catherine writes about her son Alfie, who turns two years old today! Happy birthday Alfie! He has Bullous Ichthyosis (also known as EHK). They live in the UK. Catherine explains the way Ichthyosis impacts on daily life, and how difficult it can be for people without the condition to understand the extent of it. She also writes about the doctors' low expectations of people with Ichthyosis - and this proves how important it is to share our stories. I hope they read them.

Meet Catherine and Alfie. 

On 22nd May 2013 I went into labour. Having only just moved house that week, I hadn’t seen my new midwife or done a hospital visit– my due date wasn’t for another month. I went straight to hospital and at 5:15am, 9 hours later, our little boy Alfie arrived in the world. This is where our ichthyosis story started.
As soon as Alfie was born, it was apparent that there was something that wasn’t right. He had a small patch of red skin on his chest that looked like a blister that had burst and peeled. After the midwives had rubbed him down, more skin started to peel away from his body. We were already in a state of shock from the early arrival of our son but then suddenly there were lots of people in the room discussing our child and we had no idea what was going on. Alfie was quickly transferred to the neonatal ward and we didn’t see him for a couple of hours; that was agonising.

When we finally got to see Alfie, he was in a humidified incubator wearing a nappy that looked too big for his tiny body and was surrounded by machines. It was a shock to see him, he was bright red, his skin had peeled all over, he looked like someone had poured boiling water all over him. It was heartbreaking. We weren’t allowed to touch him with our bare hands, we had to change nappies and bottle feed him wearing gloves while he was still in his incubator. The doctor told us that they suspected ichthyosis but were unsure. One thing the doctor did say was that Alfie would not have much of a life! Words can’t describe how we felt at that point.

We were transferred to a different hospital and an initial diagnosis of Bullous Ichthyosis (EHK/EI) was given. We were given a step by step skincare routine to follow – literally a set of instructions! We spent pretty much 24 hours a day on the ward with Alfie for 6 days, bathing, applying 50:50 paraffin ointment and wrapping his tiny body in bandages. We were told that we could take him home on day 7; his skin was still really red, fragile and had started to blister. Specialist nurses came out to see us and we were shown exactly how to care for Alfie, what creams to apply, how to burst blisters and how to apply dressings – things you don’t expect to have to do to your newborn baby! Our nurse specialist introduced us to the Ichthyosis Support Group (ISG).
I joined the ISG, got in contact with the ichthyosis community online, read every possible article I could find and learned as much as I could about Alfie’s condition. The ISG and online community have been a fantastic source of information and support to us when we would have been so lost. As much as people on the outside try to understand Alfie’s condition, the only people that can really know what we go through are the individuals and families affected by ichthyosis. The support that comes from the ISG and the other families is invaluable.
Alfie is now 24 months old, he’s a cheeky monkey, a chatterbox, a superstar. The last 24 months have been tough at times; we’ve had to deal with so many new things alongside the ‘normal’ learning curve that is becoming a parent. We’ve been to more hospital appointments, had more prescriptions and dealt with so many medical professionals than we imagined was possible. We have a cupboard full of creams, bandages and dressings, we find our own ways of doing basic tasks like changing nappies, swimming, getting dressed. There are things that people don’t realise are part of our life like having grease everywhere, the constant washing, the amount of appointments we have, how long the bath/cream routine takes, how much skin sheds around the house and how we often get comments (rude or not) from complete strangers. Ichthyosis is part of who Alfie is though; he will find his own way of dealing with his condition, he will have good days and bad days along the way. Although ichthyosis is part of who Alfie is, it does not define him and this is one of the most important lessons that we can teach him.

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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  1. These stories resonate with us so strongly, Catherine's story is so similar to mine! Good to know there are others out there who understand and live what we live every day. Funny how rarely we consider how hard it is for us as parents, we are always so worried about Will. Thanks Catherine and Carly

  2. You are so right, Ichthyosis does not define our beautiful children. I say that to my daughter all the time. Alfie is one handsome little dude!!

  3. Alfie is so delish! I bet everyone who meets him has trouble stopping themselves from smothering those gorgeous cheeks in kisses.

    Carly you've probably said you don't wish there was a cure for Ichthyosis, and for appearance diversity I get it; but it breaks my heart that so many suffer the pain that comes with Ichthyosis. I can't even imagine such frequent pain. As adults we can at least understand our pain, and articulate how it feels, why we're angry and upset. But it's so sad to imagine an infant or a child going through the kind of pain this little cutie (and other people in the Ichthyosis community) must endure.

    Thanks for sharing these stories. You really have opened my eyes to so much. Being sensitive to others. Minding my own bloody business (though I'd never be rude or stupid enough to say something stupid like "what's 'wrong' with your kid?"), and grateful that I don't have a health problem or illness that causes so much pain and discomfort - just to name a few things.

    I wish they could make something to take away the pain and high risk of infection. That would be awesome.


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