03 May 2014

Ichthyosis Awareness Month: Mason and Lisa's story. "This little boy has come into our lives and showed us that being different is ok, and that you will survive!"

I've been following Little Mason on Facebook for some time now. He's such a cutie! He's based in South Africa and his mum Lisa has written this for the Ichthyosis Awareness Month Blog Project. Mason is just over a year old and has Harlequin Ichthyosis. His mum, Lisa, writes about how his skin was so tight when Mason was growing in the womb that his hands and feet did not form fully. It's a reminder of just how crucial skin is to our survival - it affects our whole body, and that ichthyosis can be a serious condition.

Meet Mason. He's such a little soldier. And a cutie!

"06 March 2013 is the day it all began. After 4 days of labour, Mason eventually made his appearance into this world at 12h43 that Wednesday afternoon. We were expecting complications, but nothing as extreme as what we were faced with.

During pregnancy our doctors picked up that there were issues with Mason's hands, as well as his upper lip and nose. An amniocentesis was performed and everything came back as normal, no one could tell us what was wrong with our baby. Doctors suspected some sort of syndrome, or maybe even just a cleft palate. All that we could do at this stage was wait out the remaining months and pray that he would be alright.

Mason arrived a month early by normal delivery. As soon as he was out, there was this chilling silence in the room. Mason was not crying. I eventually asked, "Is he alright?". Our paediatrician answered me with, "He has an un-liveable skin condition" - everything else is a kind of blur from there.

The incubator Mason spent his first 5 weeks in.

Mason was faced with a whole lot of medical issues at. He was just over 4 weeks premature and he had a serious and potentially fatal skin condition called Harlequin Ichthyosis. Due to the tightness of Mason's skin, his hands and toes were not able to form as they should have. His right hand was so badly affected that in the 1st week after his birth, his body auto-amputated it. This left him with a very raw stump, with tiny bones sticking out. Priority at this stage was to prevent infection and figure out whether or not he would need surgery to remove these bones, and possibly a skin graft to cover the open area. God was definitely looking over us and our boy at this stage as Mason's body managed to grow his own skin over the protruding bones on his arm. With the help of a special dressing (Acticoat 7), Mason was able to heal up nicely and prevent any surgeries and major infections.

After a five and a half week very stressful, and very long stay at Louis Leipoldt medi-clinic, we could eventually wave the nursing staff and doctors goodbye, and bring our little boy home!


5 ½ weeks old. Leaving the hospital today!

The first couple of months at home with Mason was tough. We had so much to learn. So much to figure out. We had to figure out a skincare routine, which skincare products to use, how to control body temperature, how to get Aquaphor out of clothes, etc, etc. There was really so much to learn and figure out. But we did, and it’s become our new normal!

Today, Mason is just over a year old, and we have been extremely lucky that he has not had any serious health issues. Development and growth wise, he was a bit slow to start out with, but over the last 3 / 4 months he has had a major boost in all areas and is basically on track with what you can expect at this age.

All in all, Mason has taught us, and many others in our lives that there is so much more to life. We tend to moan over the smallest things, we take for granted what we have. This little boy has come into our lives and showed us that being different is ok, and that you will survive!"

You can follow Mason's journey on Facebook




  1. Wow, what a story. I think it is horrible that you were told at his birth that his skin condition was unlivable. Whilst rare, I would have thought harlequin ichthyosis is prevalent enough for doctors to recognise it and at least be a bit more proactive about prognosis. What a nightmare for you.

    Mason looks like a darling, and he is lucky to be born to such inspiring positive parents.

  2. Thanks for your comment SV? Sadly with some forms of Ichthyosis the prognosis at birth doesn't seem very positive. There are a few stories I've shared for IAM 2013 and coming up in IAM 2014 (including mine) where doctors haven't expected the baby to live. Ichthyosis affects the skin, and in turn affects so much more - failure to thrive, the joints, infection barriers etc - and so survival in some cases can be touch and go.

    I agree though, it must be very stressful for parents :( mine were told to take me home from hospital because I wouldn't survive. I know a few other cases similar.

    Mason is so cute and his parents are amazing!


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