It all started when Sophie was 12 weeks old, in 2010. She couldn’t ‘fix and follow’ an object with her eyes. After an urgent referral to clinic 3, and various tests, it was revealed she had rotatory nystagmus (her eyes wobble) and squints.
12 years have passed since then, with an MRI scan, electrodiagnostic tests, 3 squint operations and over 60 appointments.
Remarkably, she’s almost entirely been looked after the same 3 people - the wonderful Doctor Louise, Orthoptist Debbie, and glasses specialist Kieran.
Non-urgent advice: What is nystagmus?
Nystagmus is an eye condition which causes constant, involuntary eye movements. The eye movements may be side to side, up and down, in a rotary (circular) motion, or a combination of these.
What is the cause of nystagmus?
There are two main types of nystagmus: congenital or acquired. Some children develop nystagmus within the first few months of life. This is called “infantile” or “congenital” nystagmus and can occur when areas of the brain responsible for controlling eye movement and processing visual information do not develop correctly. Congenital nystagmus can also occur in association with a range of eye conditions such as cataract (cloudy lens inside the eye), inherited conditions that affect the optic nerve or retina, or in some cases there is no identifiable cause known as ‘idiopathic’.
Sophie's mum, Meg, describes how she has found the care and support at CUH.
I can’t begin to say how grateful we are to all in Clinic 3, especially Louise, Debbie and Kieran. Sophie started life not being able to see properly. Now, her sight has been transformed, thanks to the skill, expertise and care of her consultant, affectionately known as Dr Louise, and the amazing orthoptists.
Even operations were made ‘fun’; for one, having had the marks put over her eyes showing both eyes were to be operated on, she was given the opportunity to cycle down the corridors of Addenbrooke's to the operating theatre, with her bed being pushed behind!
When she had her last operation, she played Dobble in the anaesthetic room! No wonder Sophie calls it ‘my hospital’ and loves going to see everyone.
We can’t thank you all enough.
Sophie has this to say about her experience of coming to CUH for 12 years.
It’s been good care over the years, and even during Covid, the doctors continued to help me see as well as possible.
I especially loved picking glasses when I was younger, and during appointments, seeing whether the fly popped out of the picture...fun, entertaining times! The room I often had appointments in is well presented for children, with pictures to look at.
Also, receiving stickers at the end of appointments is great! I’ve still got some stuck on my goggles case, and in a handmade book made from paper. I have also still got a torch that I was kindly given, the same one that is used often during appointments.
Thank you!