One dad’s experience of his daughter’s vision impairment

Post date: 
Monday, 6 June 2016

Every parent wants to hear that everything is ok when their baby is born. Sadly, that isn’t always the case.

When she was two and a half, Roy Gardiner, from Linlithgow in Scotland, told us about his daughter Olivia, and how things unfolded in the moments and months after her birth.
 
“Olivia was born fully blind with corneal sclerosis, and was referred to Great Ormond Street Hospital for Children. She underwent a left cornea transplant aged two months, and then the right cornea aged four months, having a further 18 operations.
 
She’s had many more procedures and has to take several powerful drugs to try and prevent her body rejecting the new corneas.
 
Of course, it’s a lot of effort. Like many parents, we have very busy lives, but now we have to get up an hour earlier to give her her drugs, do the same for an hour at night, and make sure she gets what she needs in the day, too. Despite that, she’s a fantastic little kid who is very much a character.
 
It wasn’t immediately recognised that Olivia was blind. After the midwife left, she opened her eyes and my wife and I noticed they were opaque. It was that horror moment of “Oh my Lord! What’s going to happen?”
 
Your whole life rushes ahead of you. It was so totally unexpected. Being born in November, you wondered what your child’s first Christmas was going to be like. It was certainly not how we had anticipated.
 
Yet Christmas time was hopeful. Olivia wasn’t transplanted until January, but we noticed she reacted very well to changing colour Christmas lights. So we essentially bought ‘Blackpool Illuminations’ for the house.
 
We probably overdid things, but it gave us hope when she reacted to them. We’re very aware that visual development is crucial in the first few months of life, and did everything possible to encourage that.
 
There was no support network to help my wife and I deal with the emotions and psychological effects. We came up with lots of what we did to encourage visual development ourselves.
 
Things are different now. We have a visual support teacher, Lynn, who’s lovely, a very calming influence, and can rest some of our fears. But nobody can predict what happens in the future.
 
As a parent, you would do anything to give your child the chance of sight, but it’s tough to think long term. You don’t know how she’ll be in two or five years’ time, or even when she’s an adult and having children or grandchildren of her own.
 
But we do know that she now functions exceedingly well as a child. She’s very articulate and is independent around the house. I haven’t got her into household chores yet, but we’re working on it! If she’s blind at the end of this, she will know what her mother and father look like, and knows what flowers look like, and that’s the most important thing.”
 

Update on Olivia

Olivia is now eight years old and attending mainstream school. She still has very limited sight, but she’s adjusted well. Her favourite hobby is listening to Stephen Fry reading Harry Potter. 
 

Help and support

If you’re a parent or carer of a loved one with sight loss, our Emotional Support Service can help. Contact the Helpline on 0303 123 9999 or email helpline@rnib.org.uk
 
RNIB’s Talk and Support service also run regular telephone social groups. Email talkandsupport@rnib.org.uk or call either 0845 330 3723 or 020 7391 2218.
 
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