Ellie's Story
(child, unilateral cataract)
Ellie was born in November 2006. When she was 2 months old
her father spotted a cloudy white patch in her pupil. It was
not central and was only visible at certain angles in certain
lights, and it was only in one eye.
We looked on the internet. We vaguely knew what cataracts
were, but thought they were just something that old people got.
We found a helpline number for an eye hospital close to us and
called it, and they told us to bring her in. When we went there
they confirmed that Ellie had a unilateral congenital
cataract. They made an appointment for us to come back to a
different clinic to decide what to do.
At this point we were telling friends and family that Ellie
had a cataract in one eye, but we didn't realise how serious
this was or how much it would involve. We just thought they
could remove the cataract, as they do with old people, and all
would be well. No-one in our family has ever had an eye problem
beyond the usual short-sightedness. We went back through our
photographs and found that Ellie only ever had red-eye in her
good eye, and that the cataract was actually visible in some
pictures. We felt bad that we hadn't spotted it earlier.
At our next appointment the doctors tried to instil in us
some idea of what Ellie's treatment would entail. They
proposed to remove the lens and insert a plastic IOL
(Intra-Ocular Lens) implant. They stressed how much upheaval
it would cause – that she would need numerous operations,
would have to wear bifocal glasses and an eye patch for up to
6-7 hours a day, up to the age of at least 10 years old; that
it would affect her schooling, and our family life, and that
there was a 30% chance of her developing glaucoma, which
could leave her blind in that eye anyway. They said she may
need muscle surgeries to improve a squint, that she would
always need bifocal glasses, that she would need to have
regular EUAs (Examinations Under Anaesthetic) to monitor the
pressure in her eye and spot the warning signs of glaucoma.
The doctors were also very pessimistic about the outcome and
said that the best vision we could hope for in the cataract
eye was that she could read the very top line of the chart
(the big letter at the top). They said there was no way she
would achieve anything better than that in her cataract eye,
and that she was likely to have a noticeably lazy eye whatever
we did, because her eye had been deprived of stimulation at
such a critical age (up to 10 weeks).
The consultant told us we had a choice – to go ahead
with the treatment, or to leave it and accept that Ellie would
have very little or no sight in that eye. You can still of
course live a full and happy life with monocular vision, you
can even drive a car. And Ellie could avoid having to wear
glasses and an eye-patch, and just have a ‘normal’
childhood. We were really torn. We were given a week to decide.
We thought – maybe she'll get glaucoma if we go ahead?
Maybe she'll be bullied? Maybe she'll hate wearing the eye
patch and resent us for forcing her to go through all of that?
But we were also told that if we did not go ahead, if we
just left it, Ellie would need surgery anyway to correct her
squint / lazy eye; we were also under pressure from friends
and family to go ahead. They felt that we should do
everything we could to try to get better vision in that eye.
People said things like, ‘imagine if something happened
to her ‘good’ eye – then she would be
blind’ which seemed unlikely but was something else to
consider.
It was probably the toughest decision we have ever faced,
but we decided to go ahead. The consultant seemed pleased,
as though we had made a good decision, and scheduled Ellie's
operation for about a month later.
She had to be checked by a pediatrician, which included
rather hilariously getting a urine sample (we had to hold
her over a plastic bag until she complied!), but they said
she seemed normal apart from the cataract. This was a relief
as we knew cataracts are often linked with syndromes like
Down Syndrome, although that applies more to bilateral
cataracts than unilateral. Still, it was good to get an
‘all-clear’.
When Ellie was 4 months old, she had the surgery to
remove her lens and insert an IOL. It was heartrending
to hold her while she was anaesthetised and then leave
her lying lifeless on the operating table, but it only
took an hour or so, and by the time I had got myself a
coffee and flicked through a magazine to take my mind off
it, they were calling me to get her. I ran through the
corridors and found her crying, wide awake but with a big
white ‘pad’ taped over her eye. That afternoon we
stayed in the hospital and she was very groggy, she
basically just fed (breastfed) a tiny bit and slept.
A nurse forced her to take a glucose solution from a
bottle, which I was uneasy about because she had never
had anything other than breastmilk at that point and had
never tried a bottle, but as I was on my own and the
nurse was quite insistent, I allowed it and she did sip a
little.
I was told that during the operation they had
discovered that Ellie's cataract was caused by something
called ‘PFV’ – Persistent Fetal
Vasculature.
We were allowed home that afternoon and given eye
drops to give 6 times a day. It took a few days to get
into the swing of the eye drops but once we had the hang
of it they were no problem, although of course I was
relieved when they went down to 4 times a day after a few
weeks. The evening after the operation we were told we
could remove the white pad and just have a clear plastic
shield taped over her eye. I was really worried about
taking the pad off, I had no idea what her eye would
look like, and I’ve always been squeamish about eyes
– I worried that it would be bloody and gruesome. But
it was fine, her eye looked normal, just a bit swollen
and a bit red and watery.
We were going back to the hospital weekly for a few
months and although Ellie recovered well, her pupil in
the bad eye was ‘stuck’ in a closed position and
could not dilate properly, even with special dilating
drops. So, they scheduled a second operation to open
up the pupil.
During this time (and actually still to this day) I
felt very frustrated because I wanted to understand
completely what was happening to my daughter, but it was
all so complicated, and as soon as I had got my head
around one concept, the doctors would say something else
which would throw me off guard and I would have to spend
time on the internet just to try to comprehend the basic
sense of it. For example, the pupil was ‘stuck’
down, there was ‘scarring’, there was something
‘growing’ on the lens capsule membrane, and so on.
I still find it baffling to be honest and I wish the Childhood
Cataract Network had existed when Ellie was diagnosed because
the only support groups and websites I found were from the US
and Canada, and were full of very knowledgeable adults,
and many of the discussions were irrelevant to me (though
I read every post religiously just in case it had some
relevance to me and Ellie).
The second operation happened when Ellie was 6 months old.
I knew what I was doing so it wasn't as stressful as the first
time. They tried to open up her pupil with the laser but it
didn't work so they ended up having to ‘cut’ the
eye again. Again she was on eye drops and had a plastic
shield.
She was given glasses – at first they gave us the
wrong type, but then she was given a better-fitting pair
– and she wears them very well without pulling them off
too much. She has sat on them once and they were all mangled,
so we had to go to our local optician to get them pulled and
tweezered back into shape – I am sure there will be much
more of that as we go through the toddler years!
Ellie is now one year old and everyone says she looks very
sweet in her glasses. So far the pressure in her eye is normal,
and her vision when patched is very encouraging, though until
she can talk we don't really know how much she can see with
that eye.
We still have no idea what caused Ellie to have the PFV
that caused her cataract; we have been told that it is likely
to be a fluke with no hereditary implications. I still get
upset that my beautiful, beautiful daughter has had to go
through all of this, and will have to endure still more in the
future; but most days go by without me really thinking about
it.
She has to wear a patch 2 hours a day to improve the
vision in her cataract eye. We struggle with the patching
– she rips the patches off, and cries, and pulls at her
glasses, and I feel like giving up most of the time, and it's
difficult because I don't know anyone else going through the
same thing. But we try to get as close to the 2 hrs a day as
we can, and sometimes we manage to leave the patch on for
longer, so hopefully the weekly total is somewhere near to the
recommended amount.
If you are reading this and your child has been diagnosed
with a unilateral cataract, I wish you all the luck and
strength in the world to deal with it, and I want to reassure
you that normal life CAN continue even with glasses / contact
lenses or a patch – it's just something extra for you to
remember and deal with. It is a challenge, but that's what
life is all about, isn't it? Best wishes,
Love, Ellie's Mum x
Last updated: 26/02/08
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Childhood Cataract Network
