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3rd August 2004

William was born on the Monday the 19th January 2004 at 6:13pm. He was a healthy 8lb 15oz (4.02kg), scored 9/10 in his tests and nothing seemed to be different about him. He had his home visits for the first weeks after he was born and everyone who saw him commented on how healthy and huge he was!

At his six-week check-up the doctor commented on how he didn't focus, but she didn't seem to think much of it and just told us to keep an eye on him. We continued thinking everything was fine, he was our first baby and neither of us had been around babies in the past so we had no idea what 'normal' was.

When he was about 2 months old he had an unusual rash on his leg. So we called a locum to come to our home and he didn't know what it was (it was similar to that of meningacoccal), but since William was still happy he didn't think it was too serious. He advised us to go to the Emergency Room at the Women's and Children's Hospital the next morning to get some tests done.

The next morning we went to the hospital and after a short wait we were taken through to have the tests. It was awful! They took blood and he screamed, I didn't know what to do. The blood tests came back showing he was perfectly healthy but they took x-rays to make sure nothing else was wrong. Everything was fine (he had a nice layer of fat around his leg that you could see in the x-ray, you had to laugh).

But it was in the emergency room that the doctor who was attending to him noticed his eyes. Being two months old she didn't think it was something to 'wait and see' about like our other doctor. She referred us straight away to the Ophthalmology department. We got an appointment for the week after to see the specialist to check everything out.

Up till the appointment I was expecting to be told everything was okay - that he was just a bit behind others. Everyone around me, even the Child and Youth Health nurse and our family GP, didn't think there was anything wrong.

The specialist appointment was not good. They were trying to get William to look at things and he just wouldn't. Then the opthalmologist was shining lights into his eyes (William was not at all happy). Then he wanted to do some more tests. The nurse put eye drops into William's eyes and we had to wait half an hour for them to work. By now I was starting to freak out!

After the half hour we went back into the examination room and the specialist turned off the lights and was looking through some sort of machine into William's eyes. William was screaming and I was just thinking, "Is this really necessary? My boy is perfect!" But I didn't say anything.

After a while the specialist turned back on the lights and turned to us and said straight out "He has albinism…" The next few sentences I can't remember, all I could think was "What?" I was only half listening to him and I heard something like "The typical idea is always white hair and pink eyes, but that isn't usually the case". And, as if in slow motion, my brain was going, "He's trying to tell me William is an albino".

From then I wasn't listening at all. I can remember the basis of what was said, but not exactly. I picked up a few things, but my brain had gone somewhere else. I was holding William and I couldn't help it, but I started to cry. I had no idea what it meant to be 'albino'. To tell you the truth I never even knew Albinism affected eyesight, I just thought it was white skin and hair. I had absolutely no idea.

The rest of that day is a bit of a blur. I remember calling my mum to tell her and crying a bit more, then Brad calling his mum. My first reaction was that I didn't want anyone else to know. Until I knew what was going on and understood it I didn't want to be explaining anything to others.

I did some searching on the Internet and found NOAH, posting a message there and getting advice from people in the same position was really beneficial. We had another appointment the week after with the specialist to discuss it further.

I don't remember much of that appointment, the only bit that stands out is the specialist telling us William wouldn't be a Braille baby and that we would have to wait and see what his vision would be like. I'd already gone nuts searching the Internet for information so I understood most of what was going on.

The next thing the opthalmologist did was got in contact with the Early Intervention Service run by Townsend House here in Adelaide. They contacted us and began seeing William, bringing toys to try to help his eyesight. They also recently started a baby group, not just for babies with Albinism, but with any type of vision impairment.

The thing that really bothers me is other peoples reactions. We don't tell many people, even half our family don't know, because the way they react. The people who are closest to us we have told. Half of them didn't say anything and tactfully researched it in their own time before coming back to talk about it. The other half burst into tears because, like me, they'd convinced themselves nothing was wrong.

William's only just over six months old and already I'm sick of the comments. People can't tell just from looking at him but if they ask what's wrong with his eyes (he has pretty bad nystagmus) I'll tell them. I've had comments from "Oh, I'm so sorry!" to surprised looks followed by a quick exit on their part. Our old GP even asked us if it meant he was going to be retarded (so you can understand why we left that doctor!).

I think the main problem with most people is ignorance. They don't know what it means to have Albinism. I still don't think it's right though to turn around and ask if he's going to be slow! Imagine if that was actually true! How bad do you think that would make the parents feel?

I was completely uneducated before William was diagnosed, but I still wouldn't have asked anything like that. I would've avoided questions that might be offensive. I've been accused that it was something I did or didn't do while pregnant that caused it. Sometimes I'll explain the condition and other times I just want to tell people to bugger off!

So for now we're just waiting. Even though we've got another appointment in September they really can't tell us accurately how well William will see until he's about 4 years old. I'm a really impatient person so all this 'waiting' is not helping. I'll get my hopes up and completely forget he has Albinism until I see a 'normal' baby and they stare straight at me or until someone says something about his eyes. It's hard because every time that happens I feel the same way as when I found out.

I'm not upset that he has Albinism, out of all the things that could have been wrong with his eyes, this is the best outcome we could have hoped for. It's just that nobody wishes that anything is going to hold their child back. Still most of the time he's a really happy, gorgeous little man. He has his cranky times like any baby but he's the healthiest, happiest, most lovable baby the rest of the time.