(child, unilateral cataract and glaucoma)
Firstly before I tell you more about myself and my family and experience – I just want to say that if it wasn’t for the who set up and run support groups such as this….I don’t know how I would have become as strong, confident and accepting of my son’s condition as I am. If I had known before ever having children that it would be so challenging, I’m not sure if I would have had the guts to go ahead! I have to say though…I am loving being a mum!
Well, Dan was born three weeks early after a very long and stressful labour. On his first day of life we were told by the Paediatrician that he had something blocking the reflex behind his eye and that it could be serious. The following day he went to a different hospital to be examined (without me, I was having a blood transfusion) and my fiancé was told to be prepared for news of a retinoblastoma (eye cancer). After twenty-four agonising hours we were told at a third hospital that Dan had a unilateral cataract in his right eye. Whatever was said to us following that was a blur! We couldn’t get over the words “it’s not a tumour” and thank God it wasn’t! We felt so lucky.
At 3 weeks of age the cataract was removed. We didn’t even realise that we had a choice, that we could have left the cataract in, and had no awareness of the risks of glaucoma. At the time we had no Internet access and no knowledge of any eye conditions (gosh we have learned so much in 3 years!) so we just went along with what the professionals told us.
At 5 weeks Dan was fitted with his first contact lens and I was very nervous about the whole thing. Then two weeks after that we was on the beginning of our very long road to patching! We began patching for an hour a day at first and I made up every excuse going for not making Dan have to wear it! After then researching the benefits of patching and reading other parents’ stories, I realised that I had to bite the bullet and get on with things. I was wasting time and losing valuable patching time when it was most important. So then I was feeling guilty!!!!!! It’s a never-ending roller coaster!
As the weeks went by, the contact lens was popping out of Dan’s eye up to ten times per day and we must have lost dozens! When Dan was almost six months old, we made an appointment with the Consultant to check Dan’s eye as it was looking hazy only to be told that he would need an EUA (examination under anaesthetic) as soon as possible.
Dan was diagnosed with secondary glaucoma and it was explained to us that he developed this as a result of having the cataract surgery. Somehow, this was a worse feeling for us than when he was diagnosed with the cataract. We knew a little more about glaucoma now and that there was no cure, a deteriorating condition that could cause pain and loss of vision. Grrr….we had really gained confidence in patching and had worked this all into our lifestyle and routine. We wanted to fight this disease and never before had we wanted to put a patch on Dan so much!!!! It was one thing we had control of. Not anymore!
Dan was then referred to another hospital in another city but we were knocked back as the specialist in paediatric glaucoma was on leave. So we made our first trip out as a family the 600mile round trip… TO LONDON.
The consultant there carried out three courses of laser treatment to lower the pressure in Dans eye and along side this I had many different eye drops to give throughout the day. The contact lens became too much of a hassle as his eye was changing shape and size so much. This was also having an impact on his vision and we were seeing very little result from the patching. So by six months Dan had his first glasses and we never looked back! His vision soon started to improve and we didn’t have any more worry about the lens (it was crazy, I was becoming obsessed about checking in his eye to make sure it hadn’t popped out!). The glasses made things easier all round and the fact that Dan’s vision was starting to improve made it certain for us that we had made the right choice!
When Dan turned eighteen months he had a tube implant in his eye as it wasn’t possible to carry out any further laser treatment. This so far has been a success and he became eye drop free a few months after the operation. He still has regular EUA’s to check the optic nerves and pressure but as he grows and becomes more co-operative in clinic, we are able to avoid so many anaesthetics and can relax a little about the clinical side of things!
The other side to Dan’s condition is his patching (oh, I forgot to say that since the tube implant we have been patching for 80% of the day). Whilst wearing his patch he has poor vision and needs lots of stimulation to get him to use this eye. Dan has no depth perception and is photophobic so he can’t tolerate the sun or bright days. He often walks into doorways and doorframes and trips up over things constantly. He can’t run around with his friends as he doesn’t see dangers and pick up things like others so we are constantly watching him and trying to keep him safe. The more he grows the more he wants to do these things! It is difficult to prevent him injuring himself without having him glued to my side and this has, in the past, had an effect on his confidence and security. We have gone through clingy stages (bad ones) and then opposite where he wants to be Mr Independent but I just can’t allow it as it just isn’t safe. All this whilst trying to get him to wear a patch…he knows full well that he can see so much better if he just whips it off!
To be honest, Dan has made me proud, because he hasn’t let any of this stop him from being happy and that’s what counts more than anything. He’s developed in every way the same as a perfectly good and well-sighted child, ok maybe a little slower than most, but in his own time he has learned to do everything from learning to communicate, toilet train, share and make friends. He’s become his own little character and knows how to get me wound up too!!!!
In a short three years he’s had all this to deal with (nine operations too), so much patching, moving home, having a baby brother, nursery and getting through the terrible two’s!!!! (not saying that the terrible three’s aren’t proving challenging….it’s only been three weeks!!!) It amazes me how well kids cope.
Throughout all this we have had support from a QTVI and visit a playgroup for sensory impairments weekly. He has a visit in his nursery once a month from the VI service where they work on a play plan to help and assess him using his vision. We have six-weekly visits to our local hospital to have his vision assessed. Visit London as and when necessary regarding glaucoma. We have a very good health visitor who keeps a track on Dan’s development (she has just referred him for a hearing test as I and his nursery have noticed he has selective hearing). And the Paediatrician checks on his development every six months too. I have found lots of support from groups such as this one and also take part in organised activities by the RNIB (day trips etc…) . It’s so helpful meeting other parents and kids experiencing the same things.
I applied for DLA for Dan off my own bat….nobody suggested it to me…in fact, most professionals told me not to bother applying as Dan is unilateral. I even met with an officer from one large charity who told me not to bother. But many letters and forms later, we were granted the lowest rate of DLA for Dan!!! It even went to a tribunal! I had loads of support and advice from parents on the PVIC group and this is what gave me the fire to keep attem’!!!!!!!
Dan is doing very well with the patching and all is stable with his glaucoma at the moment. He received his new glasses last week and they are his first ever grown up ones so he now looks about 7 and not 3! He loves his little brother and has a great bunch of friends that all know that Dan has a special eye. They love checking out which patch he has on when they see him. It has got to the point where they don’t even look now, they are so accepting kids these days. It also seems to me that more and more kids are wearing patches these days too. Weather it’s because the parents are becoming more accepting or eye more conditions are getting picked up on by professionals now or what….it’s good to see other kids in patches and Dan knows he’s not alone!
Take care
Dan’s Mum