Ichthyosis Awareness Month: My Mum's story.

My Mum is the best. She's been my carer, my guide and my best friend. And I am continually thankful to her and Dad for for giving me such a wonderful life and never stopping me from doing anything. I can't imagine what it would have been like for her to have her life changed so dramatically after I was born. So I asked her about it.

"Roger (Carly’s dad) and I emigrated from South Africa and moved to Sydney in January 1981. My pregnancy with Carly was very normal with no morning sickness nausea etc . We moved to Albury in September 1981 and I had the normal check-ups with the gynaecologist and everything was normal. I had check-up five days before Carly was born and was then told she was upside down but because she had three weeks till she was due to arrive there would still be time for her to turn. Well she decided to arrive three weeks early and was still upside down when she was delivered. She was red all over and a dermatologist was immediately called. He diagnosed the redness as Ichthyosis Erythroderma. He also told us that by the time she left hospital (after 10 days) it would clear with creams and ointments he prescribed. This did not happen at all, in fact she got worse.

We were frantic with worry about Carly, and having no family or friends in Australia, it was hard to comprehend what was happening. The paediatrician was great, although our visit to him almost every second day was a nightmare as every time we came away there was some different wrong with Carly besides her skin problem

At three weeks Carly was admitted to The Royal Children’s Hospital in Melbourne to where she stayed for 3 months in the intensive care unit. The day she was supposed to be discharged she had a seizure so she stayed for another month. The cause of the seizure was unknown. By the time she was discharged she was half her birth weight and the doctors did not have much hope for her survival.

We went home (4 hour drive) with a sunken feeling, but decided to make the most of the time we had with her and we are still making the most of our time with her now.

Life was very slow. Each day was a bonus although we did think about how to cope in the future.

Carly had lots and lots of visits and stays at the Royal Children’s Hospital and lots of stays in our local hospital (Albury Base Hospital). The medical staff and doctors at both RCH and Albury Base were fantastic and still is now with Carly attending the Royal Melbourne Hospital.

My biggest concern was how Carly would cope growing up in a small town. We moved to a place called Walla Walla north of Albury. I took Carly to the local preschool where she had a great time, but kids were wary of her even at the age of 3 years. I worried about how she would cope in primary and high school. I did make some great friends though. They supported us and was always there when I felt down or I needed them to babysit which was not very often as I felt guilty leaving Carly.

I went back to partime work which suited our situation. The day I started work Roger rang me and said Carly had to go to hospital as she had a fly in her ear. She had to have an operation to remove it. My employer was great. I was told to have as much time as I needed.

Primary school was very average although the staff was supportive. Carly did not have close friends and I always told her high school would be better. High school was a bit better. The first three years was hard and Carly tried very hard to fit in. I use to get very angry at people staring and making snide remarks. As Carly grew older she told me to ignore them as she can cope and handle people her way without getting angry. I found people very ignorant and I still do.

Carly applied for an after school job which was at a department store. Another worry, how was she going to cope with the customers especially young kinds, teenagers or rude/ignorant people, but she took it in her stride.

Carly completed her HSC and then went on to further her studies at university - doing a bachelors and then a masters degree.

I then worried about her going out into the big wide world, but she showed us that she was confident and matured enough to move. The first year of her moving 300 km away from home (to Melbourne) was a worry, but I don’t have to worry too much about how she will cope."

 

A number of parents of children with Ichthyosis have told me about their guilt of birthing a chronically ill, visible different child. They're also worrying that life will continue to be difficult for them and their children. I asked Mum to write about her experiences and advice for new parents.

"As parents, life was a challenge. We did a lot of questioning as to why and how Carly could have been born with Ichthyosis. Our guilt was a natural feeling.

Our main aim was to get Carly home from hospital and get into a routine. Once home we decided to make the most of Carly as we were told she would not survive. The medical team we had was very supportive. My advice is:

- Speak to your doctor, ask questions , no matter how trivial.

- Take time out for yourself. There will always be someone to offer to babysit.

- Join a mother's group. Interact with children and parents.

- Don't be afraid to go out, people will stare, children will ask questions. Answer them politely. Ignore rude people.

- Feel good about yourself. If you are depressed it will rub off.

- When help is offered, take it as a fifteen minute break means sanity.

- Take things one day at a time. When Carly was a baby, I worried about how she'd go at school. Her paediatrician encouraged us just to focus on the present day and to cherish every moment spent with Carly. You can't change the future by worrying about it."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.