Jake’s Story

(child, bilateral cataracts)


My son Jake is 4 years old, he has bilateral congenital cataracts – which means the cataracts are in both eyes and were there from birth. They were inherited from his father.

Jake’s cataracts are found

Jake’s cataracts were discovered quite late; he was checked for them when he was a newborn baby due to the family history, but the doctor did not pick up on them at that time. The cataracts were discovered at a routine eye examination last year for the recurrent cysts that Jake kept getting on his eyelids.

Jake was then referred to the consultant at the orthoptic department. We met with the consultant and Jake’s vision was also checked. It was found that the cataracts were affecting Jake’s vision a lot (which explained why he was always falling over) so Jake was put on the list for operations to both eyes to have the cataracts removed and IOLs fitted (artificial lens implants).

Over the past few months I have had an emotional roller-coaster to say the least. I have been sad, depressed, anxious, nervous, worried and also relieved. Relieved that they did discover the cataracts in time for them to be operated on. When the cataracts were discovered I thought that Jake would go blind, but I found out that it is hopeful that with the surgery and IOLs and glasses that Jake had a good chance of adequate vision. It may not be perfect, but whose is? Mine isn’t – I have to wear glasses for distance.

The first operation

Jake had the operation on his left eye in December 2007. He had the cataract removed and IOL fitted. He will be having the other eye operated on in February 2008. He was in the operating theatre for a couple of hours – and it felt like he had been gone forever – it was an anxious wait. When I went to meet him in recovery he looked so sad, he was sleepy and irritable and had a big eye shield on his eye that he tried to rip off. I gave him lots of cuddles and kisses and he calmed down, and after a few minutes he asked for chocolate – so I knew he was OK then!!

After the op

The consultant said that Jake’s cataract was attached to his pupil and iris which meant a little bit of the cataract and membrane had to be left in his eye as he couldn’t snip it off as it was a part of Jake. The consultant said that Jake’s pupil might look a bit misshapen – although it looks OK to me. I was allowed to take Jake home the same day after he had eaten, drank and had a wee.

The first night home (after the operation) I didn’t have to do any drops. The next day we had to take him back to the hospital for the consultant to check on his eye. He took the eye shield off Jake and I expected Jake’s eye to look horrendous, however, it didn’t look too bad. I could see the mark where his eye had been cut to remove the cataract, and his eye was bloodshot but it looked better than I had imagined.

Eye drops

Now to talk about the drops! We were given a bag from the hospital with three lots of drops in and also an ointment. The drops had to start the day after the operation – to be done every hour for 24 hours a day (even through the night) for the first few days. After that it was every 2 hours up until 11pm at night, when I then had to put an ointment on Jake’s eye. They gradually reduced and at present we are doing them 4 times a day.

Don’t be scared or daunted by the drops; when I found out the frequency of them I was absolutely dreading it, but it quickly gets a lot easier and it is worth it if it helps your child to see. Jake wasn’t the most co-operative at first, but he has got used to them now. Children can surprise you sometimes; I didn’t think he would ever get used to them but he lies on the settee ready, and he even looks at the clock and says: ‘the big hand is on the 12, drop time!’

Jake will be having his other eye operated on in February and now that I know what to expect I imagine that I won’t be such a nervous wreck like I was the last time!

Jake is doing well and will be fitted for glasses at his next eye check-up.

with love from Jake’s Mum