Dan's Story (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
Last updated: 24/03/08
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Childhood Cataract Network
