My son Hugh is five years old and in his
reception year at a school not far from our house. He’s a really happy little boy with a head
full of crazy hair that points in every direction except the way you want it
to. He laughs a lot, particularly at
fart noises, and he loves music and singing.
He’s not much of a morning person mind you and he gets ever so grumpy
when he’s tired. He’s a little brother
to Sean, aged 6, and he brings joy and laughter into our lives every single day. “Just like a typical, little boy”, you might
say. And he is! Except he can’t walk. Or talk. Or even sit yet. He’s fed through a tube that goes directly
into his stomach. And he’s blind. And sometimes he’s stops breathing for so
long that we have to breathe for him. To
the outside world, he is profoundly disabled.
To us, he’s just our little Hugh.
You might be wondering ‘what’s wrong with him?’ or rather ‘what’s his diagnosis?’ which is a much kinder way of asking the
same question. And the truth is, we don’t know.
No one knows. Imagine that! All
the tests, all the doctors, all the specialists and all the expertise that the
NHS has to offer and still we’re none-the-wiser.
Apart from the frustration of not knowing and
not being able to give a simple answer when people ask about Hugh, not having a
diagnosis comes with its own unique set of challenges. Without a diagnosis, sometimes the problems
aren’t taken as seriously - from the patronising doctor who implied it was all
in my neurotic mind, to the kindly relative who assumed he’d grow out of it and
catch up. Professional support is often
allocated after diagnosis; Hugh waited much much longer for physiotherapy,
early teaching support and community nursing care than a child very similar to
him who had a confirmed diagnosis at birth.
Even access to equipment and adaptations to make his life easier were
delayed through the lack of diagnosis; the occupational therapy team discharged
him and said they’d reassess him for ramped access when he was older as without
a diagnosis there was no guarantee he wouldn’t learn to walk. Sadly, I’m not alone in finding this and many
parents of undiagnosed children find they have to fight to get taken seriously. Hugh requires 24 hour care and regularly
stops breathing, yet despite the fact that I was resuscitating him nearly 30
times a month and was completely at breaking point, we had to beg for
help. Without a diagnosis there was no
prognosis and so we didn’t fit neatly into any support package. Support and understanding shouldn’t be
restricted to those with a diagnosis. Furthermore
access to many parent support groups is based on the diagnosis attached to your
child, so at a time when you’re already struggling physically and emotionally
and feeling isolated and alone, you’re further excluded from accessing support
by not having the right ‘label’. It is
ridiculous that when as many as 50% of all children with learning disabilities*
do not have a definitive diagnosis for their difficulties that not having a
label still remains such a barrier. This
needs to change and awareness raising days like today’s Undiagnosed Children’s
Day is one way of doing this.
In the meantime, we continue our search for
the ever elusive diagnosis. A diagnosis wouldn’t change Hugh, but it might
help us understand him better. It might
enable us to find treatment to control the rare and life threatening form of
epilepsy that stops him breathing so often.
It might give us clues as to how best to support his physical and
cognitive development. It might give us
a glimpse into the future and help us understand the past. Maybe we’d find others with the same
diagnosis, people further along the path that could give us guidance,
encouragement and hope. A diagnosis
would provide answers as to how this
happened to Hugh. Is it a faulty gene
he’s inherited from us and if so could it happen again?
And that is why we, and so many families like
ours, continue to search for a diagnosis.
That is why I have traipsed from one end of
the city to the other and beyond, attending appointment after appointment. Over twenty different doctors and
specialists, spread across six different hospitals, all with forms to fill in,
questions to answer and tests to perform.
That is why I have spent hour after hour on
the internet, scouring medical journals and trawling through search engines,
looking for clues.
That is why I’ve woken in the dead of night,
heart pounding, panic rising in my chest, desperately trying to silence the
screams of fear in my head. Fear of the known and the unknown. Fear of what might be to come.
That is why just last week I cupped his head in my hands and sang ‘row,
row, row your boat’ for 20 minutes while two nurses pinned him down and stuck a
needle in his arm repeatedly to try and extract 7 millilitres of blood from his
tiny veins.
That is why I’ve handed him limp and
unconscious to strangers so they can scan his brain under a general
anaesthetic.
I want to know the reason behind his
difficulties. I want to know what caused
this. I just need to know why.
Because if I know why, then maybe I can help
him.
Because if I know why, then maybe I can
protect him from the worse things that might be to come.
Because if I know why, then maybe I can
prepare myself for the future.
Because if I know why, then maybe I’ll know
whether Sean or his children or any future children could be affected.
Because if I know why, then maybe I’ll know
it’s not my fault.
This post was written for Undiagnosed Children's Day and originally featured as a guest post on mumsnet here: Mumsnet Guest Post
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