Organ donation week has passed but the need to donate remains and is wonderfully illustrated by the case of Gwen Hornby. Gwen was referred to Professor Stephen Kaye for loss of vision from keratoconus. She is also on the autism spectrum, a condition which has been aggravated by her eye condition and which has implications for her treatment.
Before the operation to address her keratoconus Gwen’s eye sight was very poor – less than 6/60 which means that she could see at 6 metres what someone else could see at 60 metres. Gwen describes it: “Everything was foggy and milky. I couldn’t see my mum or my sister or my dog or the house or anything.”
Micky, Gwen’s carer, explained that Gwen struggled to wear glasses and also couldn’t do the things that she most enjoyed; arts and crafts, riding her bike, watching TV etc. The impact on Gwen was so profound that she was becoming depressed and uncommunicative: “she was just shutting down”.
Preparing for surgery
In March 2017, Gwen underwent a corneal transplant in her right eye. It was a procedure her mother and carers feared would never happen. “We tried a few times to do this transplant for Gwen, and at one point we thought that she wouldn’t be able to go through with it.” There was a risk of infection and a potential for the transplant to fail with further loss of vision. After discussions with a Sister Britten, the corneal nurse specialist, and with the help of other St Paul’s staff who made reasonable adjustments for Gwen, the operation was able to go ahead.
Gwen visited St Paul’s several times to prepare her for the operation but she was still very nervous:
"It was scary going into hospital. I was terrified but the nurses and doctors explained what would happen so I felt ok, and then I went to sleep."
A rejuvenated Gwen
The post-operative change in Gwen was almost instantaneous as she could see almost immediately. “I can see everything now – airplanes, cars, the dog, the TV – everything.”
Gwen’s mum and Micky can also see the change in her. “She is a lot more confident now and a lot happier. She’s willing to go out and is a lot less clingy when we’re out. And she’s back to doing the things she loves like arts and crafts and watching her favourite TV programmes”. Worries around Gwen’s aftercare – ten eye drops per day and having to avoid rubbing her eye – proved largely unfounded and Gwen still adheres to the plan.
Gwen’s surgeon, Professor Stephen Kaye said: “Gwen is making a good recovery and her vision is now 6/9, which is having a really positive impact on her well-being. This progress is a tribute to her family and carers who have done so much to support her, and also to St Paul’s staff who made all possible provision for Gwen. Her story really drives home the need for people to register to donate their corneas. ”
"Everyone at St Paul’s really helped. Everyone was so relaxed with her – they were amazing. It’s a massive achievement for Gwen to undergo this operation and it has made an enormous difference to her life. I didn’t realise that you could donate your eye tissue but now I tell everyone about the change in Gwen and encourage them to sign up to donate."