Tonight Casey writes of the first year of having a baby with Ichthyosis. Chaz has Netherton’s Syndrome and has just turned one.
I am so glad we met – Adam and I are travelling to Ballarat to spend a day with the family soon.
Meet Casey and Chaz.
“Hi my name is Casey in 26 years old and I live in Ballarat in Victoria. I’m married and we have a very special man named Chaz. Chaz is one and is living with Netherton’s syndrome. The first 6 months was such a rocky road with spending 6months in the Royal Children’s Hospital fighting infections, high sodium and failure to thrive. We were first told by the doctors that the first 12 months will be the hardest with Chaz having to build his immune system up, so we prepared ourselves to be in and out of hospital.
Pregnancy and labour were pretty good. The first 2hr of Chaz life was spent on my chest and it’s the moment I will treasure forever. That moment of excitement, joy, unconditional love that you final have your health baby in your arms. Not knowing that anything was wrong or what road was ahead of us was not on our mind. Chaz spend the first 5days in special care unit as doctors where trying to work out what was going on with Chaz skin. Day 5 Chaz was rushed to nicu at The Royal Children’s Hospital has he was servilely dehydrated and had high sodium. Doctors run a skin and hair biopsy for NS but it come back inconclusive.
Having a child with a rare skin condition has made such a stronger more confident person. I have learnt things I never thought I would have. During the journey there were many tears, smiles and doubt along the way. The hardest thing I find I have to deal with are peoples questions and finding the right words to explain it also the way people look at us (like we have let our child get sunburnt?). I know that as time goes on I will find it easier to explain. Chaz’s routine of bathing, feeding, and nappy changing takes a long time to do as he doesn’t like his creams and will often cry.
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.