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