The week before Christmas I was dropping JC off at nursery. Jboy was 3 months old at the time and for a change, was wide awake in his car seat. The nursery staff all love gooing and gaaing over him when he comes in and that day was no exception. After I had checked JC into his class, the nursery teacher put a concerned hand on mine and said "What is wrong with your baby?"
In that moment I felt a flood of defensiveness, little did I know that this feeling was going to dominate my spectrum of feelings for the foreseeable future. After quite harshly telling her nothing was wrong I asked what had prompted her to ask such a thing. She explained that his eyes didn't look quite right. They were constantly moving, involuntarily and she was concerned that this was 'not the norm'.
I left feeling pretty rubbish. I was supposed to be going Christmas shopping but instead I phoned my health visitor and asked if I could bring him right up for a check over. I had noticed that his eyes danced a lot but had put this down to developmental reasons and expected that over time this would disappear. I was now doubting myself.
After a peek in his eyes with a light (much to his disgust) she said "yes, his eye movements are concerning. It looks like Nystagmus which is a visual problem, causing the eyes to move all the time, it's sometimes referred to as dancing eyes. I'll need to refer him to the specialist. I'll send away the referral today as a matter of urgency" My heart kind of sank in that moment. Not only because I hadn't raised this concern sooner, off my own back but because I didn't know what this meant for him. How would this effect him, what was the cause?
This video will give you an idea of what his eyes looked like at that time.
I won't bore you by slagging off the NHS waiting times, the subsequent cancellation of appointments, followed by turning up at our appointment and the doctor not actually being there, admin error. At this appointment, we were seen by the nurse who confirmed that he did have Nystagmus. She said enough in those 5 mins that filled me with dread. She couldn't give me any information, tell me why he had this, give me any indication of treatments or impact on his sight. I had to wait for the next appointment when the doctor was back. We both left feeling broken and full of questions.
To cut a long story short. He has Nystagmus but this is only a side effect of an underlying problem. The reason he has Nystagmus is because he is albino. He has Occular Albinism which is a lack of melanin/pigment in eyes. Some people can have this all over their body so they have very pale skin, white hair and body hair. Jboy's albinism mostly effects his eyes although his skin colouring is quite pale and his hair is blonde. We were very shocked by this diagnosis as it is genetic but we don't know of anyone in our families with this condition and being a boy, it should have come from me but I am not a carrier. We are still undergoing testing at this time to find out the source of this.
So what does this all mean for him?
|Just look at those beautiful eyes|
Well, in short he will be visually impaired but we won't know to what degree until he is older. He is unlikely to drive as even with glasses his sight will not be good enough to pass the sight test. With albinism alone, this would have been a difficulty but the moving eyes will bring its own challenges. Like so many conditions, everyone experiences different symptoms to varying degrees so it is really a wait and see scenario.
|The Head Tilt|
What I can tell you is that his sight wont get any worse and at the moment it isn't holding him back. He appears to be able to see quite a lot although we are unsure of the quality. It does mean that he has the most startling looking eyes. Big blues with a ring of white around the pupil. The main issue he has is with the sun. He is very light sensitive and he suffers in bright light. It's easier said than done to make a 10 month old wear sunglasses and a hat!
Apart from his eye movements, the most noticeable thing is that he looks at you with a head tilt. This can sometimes look like he is grumpy or giving you the long stare but this is a common strategy that people with Nystagmus use to stabilise the eye. When he looks up at you like this his eyes stop shaking and he can see you clearly.
There is no cure for this as it is a genetic condition, not an eye problem. Whilst there is plenty we can do to support him and techniques he will work out for himself, this isn't going away. As you get to know him, it may appear that his eyes move less. They will. His brain knows what to expect to see so his eyes do shake
less around known environments and people. When he is tired or in a busy environment they move more. From the electrical testing of brain activity they conducted at Yorkhill, we know that his brain behaves differently from the average brain. As he gets older we will have a better idea of his individual needs. For him it will mean wearing glasses, support in school (although he will be in mainstream school) and having to stay indoors or covered in bright sunlight (we should have called him Edward Cullen lol). For his Dad and I it will mean lots of hospital visits, lots of explaining to strangers why he is 'looking at them weird' and worry, lots of worry.
|The Riddick Look|
Our outlook on this is that it could be worse. It's not great, but it could be worse. When you have children you don't want them to start life with any kind of disadvantage. You want them to be able to hear, see, walk, talk without barriers. Life doesn't always go to plan. It's how you deal with disadvantage that defines you. As he grows older I will never tell him that he can't. I will always encourage him to try. I will always encourage him to strive for what he wants. Enthusiasm is the key to a successful life. It is the mind that achieves not the body.
So to answer her question. There is nothing wrong with him. He is perfect.
Thanks for reading!
I found this article very inspiring about a mum who wont let Albinism hold back her children's dreams which inspired me to write this post. Read it here. I had reservations about publishing this post as it's a private family matter but if someone reading this benefits from it then it is worth writing.