Rachel's Story
(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.
Surgery
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.
Eye Drops
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.
Patching
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.
Clinic Visits
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.
Getting Information
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
Last updated: 14/10/09
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Childhood Cataract Network
