(child, bilateral cataract)
My daughter Rachel was born in 2006. I have a family history of congenital cataracts, so her eyes were examined on the post-natal ward soon after she was born. As cataracts were present she was immediately referred to a Paediatric Ophthalmic consultant and both cataracts were removed when she was two weeks old.
Getting the Diagnosis
My husband and I knew that there was a significant chance that our baby might inherit cataracts. The diagnosis therefore wasn’t a shock, but the reality was hugely upsetting for us both. I’m rarely disadvantaged by my own visual impairment, yet I felt tremendous guilt, knowing that I was genetically responsible for Rachel’s condition.
Rachel had three operations: two lensectomys to remove the cataracts (five days apart); and a vitrectomy six weeks later (to relieve pressure in one eye). The hours before each operation were tough – particularly once Rachel got hungry being nil by mouth before each general anaesthetic. For me as a new mum, still acclimatising to broken nights and the physical effects of recent labour, this time was undeniably challenging. I was breastfeeding too, and missing feeds was frankly, very painful!
We always carried Rachel to theatre and on every occasion I felt deeply emotional leaving her asleep in the pre-op room. It was always such a relief to get the call to say she was back in Recovery.
Rachel’s eyes are small and she has a nystagmus, so it’s sometimes difficult for accurate pressure readings to be taken in Clinic. She has therefore now had a number of Examinations under Anaesthetic. These EUAs are typically very quick and thankfully Rachel always seems to bounce back within a couple of hours after returning from theatre.
In the months after surgery eye drops were a part of daily routine. As my vision isn’t great I found it helped to enlist additional manpower – my husband did the drops before and after work, the nurses at our local GP surgery did two or three each day and I did the rest – a lot of planning for something so simple, but I felt it made the frequent drops in the early weeks seem far less overwhelming.
Glasses and Contact Lenses
As Rachel’s eyes are small, lens implants (IOLs) were not an option. We used contact lenses until she was about a year old, but it became increasingly difficult to get them in and out and we ultimately decided to take a break from using them. Rachel is very happy in her glasses and is thriving.
Rachel wears an eye patch over her stronger eye for an hour or so every day. Fortunately she rarely objects. If anything patching has become easier as she’s got older – she now understands why she wears a patch, and we can negotiate on when she’ll wear it, what we’ll do while she’s wearing it, etc.
In the weeks immediately after surgery Rachel’s clinic appointments were very frequent (once a week for the first few months). The gap between appointments gradually lengthened and we now attend the hospital once every three to four months. On a typical visit, Rachel is seen by an Orthoptist, an Optometrist and an Ophthalmologist.
We were given a booklet on cataracts at our first clinic appointment. Rachel is under a fantastic Ophthalmic team in London and it’s easy to ask questions when we visit the hospital. Our local authority has a teaching support team dealing specifically with visual impairment – they offer information on local access services and educational advice. Whilst we don’t have an immediate need for their input, they should be able to provide appropriate assistance, if necessary, when Rachel starts at school.
Looking to the Future
Inevitably challenges lie ahead, but through my own experience of living with visual impairment I’m sure that few will prove insurmountable. I went to mainstream schools, have worked professionally since graduating from university, and I’m certain that, with the right guidance and encouragement, Rachel has every chance of growing up to be confident, accomplished and happy