Undiagnosed son with a severe learning disability, Medically Intractable Epilepsy, Swan UK
Emma's Journey
There are so many many many times I've thought my son was dying. So many times I've begged and cried and pleaded with God. There have been the dramatic side-of-the-road-giving-mouth-to-mouth-incidents and the more 'controlled' 20-doctors-and-nurses-around-his-hospital-bed-on-a-'crash-call'-with-a-resus-trolley-and-heart-paddles, to the "shit-he's-stopped-breathing"-in-the-middle-of-dinner-at-your-mate's-house kind of events with Hugh. And there's the times that I've woken in the middle of the night or early in the morning, too scared to check-just in case.
Sometimes
when I’m writing in the early hours of the morning my laptop will ping and
I’ll glance to see who the message is from. When I read the words 'Little Mamma said' the email has my full attention. I open the blog to which I
have subscribed and sit back to read. It’s another one of Emma Murphy’s
heart-rending posts about life with her severely disabled three-year-old son,
Hugh. It’s also about how she is constantly at war with the Epilepsy that
threatens to ravage him. I pause for just a moment and stare
blankly into space as I wonder how she copes. But like all of our warrior
mums, Emma has accepted the role she never expected to play and does it with
tons of love, guts and determination.
Emma's Journey
There are so many many many times I've thought my son was dying. So many times I've begged and cried and pleaded with God. There have been the dramatic side-of-the-road-giving-mouth-to-mouth-incidents and the more 'controlled' 20-doctors-and-nurses-around-his-hospital-bed-on-a-'crash-call'-with-a-resus-trolley-and-heart-paddles, to the "shit-he's-stopped-breathing"-in-the-middle-of-dinner-at-your-mate's-house kind of events with Hugh. And there's the times that I've woken in the middle of the night or early in the morning, too scared to check-just in case.
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On holiday in Ireland with Mum, Dad and 2 brothers |
Mum and Dad worked hard, Dad as a machine driver
and labourer and Mum worked nights in a care home so she could be at home for
us before and after school. It instilled
in us a good work ethic and I started work part time at 14 in a cafe. After
leaving school and sixth form I went on to university to study psychology and
sociology but I continued to work at weekends and in holidays.
Why did you decide to become a special education teacher?
Part of my course at university was about
autism. I found it fascinating and
wanted to learn more. My tutor was
inspiring and he found voluntary work for some friends and I homeschooling a
child with severe autism using a behavioural approach to learning, known as
Lovaas.
It was hard work but I loved it
and after leaving university I went on to use applied behavioural analysis
(ABA) with a number of other children, but this time as a paid therapist. My then boyfriend (now husband) and I lived
in Jersey for a year where I continued this work alongside working as a special
needs assistant in a mainstream nursery and part time in a medical centre. Working with children made me consider a
career in teaching and when we returned to Birmingham I decided to apply to do
a Post Graduate Certificate in Education (PGCE). Unfortunately I failed to secure a place, but
instead found work supporting parents of children with special needs through
the Parent Partnership Service. Little
did I know that all of these experiences would help me in later life.
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My Graduation in 1999 |
I started teacher training a year later and spent
two years teaching in a mainstream primary.
Initially, my intention was to get the relevant teaching experience and
then move on to train to become an educational psychologist. However, once in the classroom I discovered I
loved teaching but I was still very interested in autism and special needs, so
when a post for a teacher in an autistic specific special school came up, I
applied and was delighted when I got it. I worked there for six years and was intending to return part time after
having the boys but Hugh’s medical needs made returning to work impossible and
I had to resign in July 2011.
Tell us about your sons
Sean and Hugh are my two wonderful boys. Sean was born in 2009, a month before my dad,
his namesake, died of cancer. It was
obviously a very difficult time for the family but knowing that my dad met his
first grandchild before he died is a very special memory.
Sean is a delightful, confident little boy. He is incredibly funny with a great
imagination and he makes me laugh every day. He loves running around, playing rough and tumble games, pretending to
be a superhero and playing with cars. Yet despite his boisterous, outgoing nature he is incredibly kind and
gentle with his little brother and he shows insight, empathy and understanding
beyond his years.
Hugh was born just 14 months after Sean in 2010. Just looking at Hugh fills me with a warm glow. There is something so perfect about him and just sitting and holding him can fill you with such peace. He seems to have a profound effect on people. Anyone who meets him falls in love him. I am so incredibly proud of both my boys and love them both very dearly.
After all the experience you gained teaching special needs children, it must have come as a shock to find yourself on the other side of the fence with your own special needs child?
Hugh is severely developmentally delayed; he’s
nearly three and a half but still functions at below that of a six month
old. He can’t sit, stand or crawl
independently, is non-verbal and is registered blind. He is fed via a tube straight into his
stomach and has medically intractable epilepsy – his seizures are life
threatening. It sounds ridiculous that
after all my experience of working with children with special needs, that I was
shocked to discover that such a degree of disability existed.
I’ve met and worked with children with severe autism, Downs Syndrome and all manner of physical and learning difficulties but I had never imagined what having a child as profoundly disabled as Hugh would be like.
On paper it sounds depressing. I think that if I had been presented with a list of Hugh’s difficulties when I first began to suspect that something was ‘different’ about Hugh, I’d have been terrified, heartbroken. But that list of all the things my son can’t do, all the things that are ‘wrong’ with him, tell you nothing about his wonderful sunny personality, his smile that literally lights up his whole face, how he has the cutest giggle imaginable. He might be profoundly disabled and have complex medical needs but first and foremost he is a little boy; he is my little boy.
I came across your blog - The Unwelcome Visitor - which gives some alarming insight into Hugh's epilepsy. Thank you for sharing this very powerful piece.
Hugh quickly secured his status as a regular with
weekly, sometimes twice weekly admissions. He was presented with his loyalty
card, granting open access to the ward. I was given a crash course in
paediatric medicine, a learn while you work apprenticeship (though it was
pretty poorly paid) supplemented by tutorials with Dr. Google. Now I'm the one
asking for meds from the CD cupboard, with a collection of syringes on the
bedside table, checking the oxygen at the bed stations and adjusting the
settings on the SATs monitors. Other patients look on in wonder as Hugh is
greeted like an old friend with exclaims of, 'He's grown so much' and nurses
from neighbouring wards popping by to say hello, like he's a local celebrity.
The parents glance slyly across as I attach purple tubes to beeping machines to
hungry tummys. They turn away uncomfortable and embarrassed as I set off angry
alarms and nurses and doctors come running with shouts of 'crash call' and I'm
pushed to the side while near- strangers try to save my son's life. They
stroke the hands and faces of their own precious babies and silently thank God
for *just* a broken leg and *only* a chest infection.
How difficult is it having two little boys not that far apart in age when one of them is often rushed to hospital in an ambulance. How do you explain to Sean?
I’ve met and worked with children with severe autism, Downs Syndrome and all manner of physical and learning difficulties but I had never imagined what having a child as profoundly disabled as Hugh would be like.
On paper it sounds depressing. I think that if I had been presented with a list of Hugh’s difficulties when I first began to suspect that something was ‘different’ about Hugh, I’d have been terrified, heartbroken. But that list of all the things my son can’t do, all the things that are ‘wrong’ with him, tell you nothing about his wonderful sunny personality, his smile that literally lights up his whole face, how he has the cutest giggle imaginable. He might be profoundly disabled and have complex medical needs but first and foremost he is a little boy; he is my little boy.
People often say that God only gives
special children like Hugh to special people. But I believe I am the
lucky one to have been given the chance to love such an amazing child.
Epilepsy made a sudden and
unexpected late night call to our house last week. He hadn’t been invited
and I think it was a bit rude to turn up unannounced at 10:30pm while I was
enjoying a glass of wine and watching The White Queen.
It was sneaky, I think, to wait
until the one night that I’d put Hugh to bed without the SATs monitor on
but I caught Him on the video monitor all the same. Hugh had had a
lovely day at the farm – laughing at the noises the animals made, giggling when
the sheep licked the food off his hands. I’m not sure why Epilepsy wanted
to spoil that. But He was angry and came in with a vengeance I’d not seen
in a long time.
He tried to take my baby
again. Three times Hugh turned blue. Each time more and more navy than
the time before. His little finger tips nearly black from the lack of
oxygen; the SATs monitor screeching its high pitched warnings. I breathed
life back into his lungs and begged him to come back to me. It’s been 21
months since I’ve had to give Hugh midazolam, I could barely remember how
much to give – maybe that was why Epilepsy had waited so long; I’d started to
become complacent, He thought He’d catch me off guard. But I did
remember, just in time and after four long minutes Hugh gasped for air and
Epilepsy left his body; weak and pale and breathing.
Hugh slept by my side all
night; the still and lifeless sleep of the heavily sedated. I watched and
waited; a lioness protecting her cub, ready to pounce should the predator
return. And return he did, as the sun began to rise. First slowly, but
growing ever stronger, lingering longer and longer each time. Trying
again in the car on the way to hospital was a sneaky move, but I was prepared –
oxygen at the ready.
At the hospital, first in
resus, then in the High Dependency Unit, sedative after sedative was pumped
through Hugh’s veins, trying to flush the demon out. But time and
time again he tried to take my son with him.
I prayed and I cried and I
watched and I waited. Not knowing what would be left of my son. Epilepsy had ravaged his brain before – taking his beautiful smile. It
took Hugh two weeks to open his eyes, months to learn to hold his head up
again. Powerless I waited to see what devastation Epilepsy had caused
this time.
Forty eight hours, twenty seizures, midazolam,
clobazam, lorazepam and Phenobarbital, two crash calls, ‘bag and masked’ eight
times, a collective total of 45 minutes of not breathing...
And this little beauty came back to me.
Does that mean you’re always on high alert, ready for a hospital admission?
Does that mean you’re always on high alert, ready for a hospital admission?
In the first winter of Hugh's life, he became a
regular visitor to the children's ward. I remember during one of those early
admissions talking to the nurse about his repeated visits and wondering if this
was a pattern likely to continue. He'd had every illness going from chest
infections and infected eczema to the more obscure cellulitis and swine flu. If
you could catch it, Hugh would get it and he decided to further complicate
matters by giving up breathing just before any illness would strike. Or while
he was teething. Or indeed for no apparent reason at all. We later discovered
this trick of going blue at inopportune moments was epilepsy. It certainly made
winter *ahem* interesting and acquainted us with the West Midland's Ambulance
Service. It also meant we had our own bed reserved at Hotel Heartlands- a nice
little ensuite, with views across the car park. The nurse confirmed my worst
fears- that some children were season ticket holders and became familiar faces
on the ward.
Over the following year, I met a few of the
regulars. You could instantly spot them- they were on first name terms with the
nurses and helped themselves to bedding from the linen cupboard. They used
medical sounding words and spoke knowledgeably and confidently to the Drs, no
shuffling shyly and deferring to the Drs clearly superior knowledge for them! I
watched in fear and awe as they handled huge syringes and pressed buttons on
monitors with rapidly blinking lights and important sounding alarms.
And us regulars, war weary and battled scarred,
smile a knowing smile at each other, a sad smile that says we've been there;
we'll be back.
It has its upsides being a regular though : they
know how you take your tea!
How difficult is it having two little boys not that far apart in age when one of them is often rushed to hospital in an ambulance. How do you explain to Sean?
How do you explain to a four year old why his brother's not breathing?
How do you explain to a four year old why you need to call an ambulance?
What do you say when he asks how long it'll be before you come home?
Sean was probably around two and a half the last time we called an
ambulance, three at the most. He'd seen it before, regularly, often, and
it never occurred to him to worry. He didn't know any different.
Ambulances and oxygen and hospitals had been part of his life for as
long as he could remember.
But we had a reprieve, a break from all that.
And now he's four and a half. And he knows about emergencies and
ambulances- they're taught it at nursery and school. Most children
relate to it through things they've seen on TV- Fireman Sam and
Balamory. Sean knows more than most.
He knows the paramedics come first in the smaller car. He knows that you
have to wait a bit longer for the big ambulance- this one has the bed
in. He knows that a bag and mask is to breathe for you and that
sometimes Hugh's brain stops telling him to breathe. He knows that the
blue lights and sirens mean its an 'emergency' and they can get to
hospital faster this way. He knows his mummy has to go with his little
brother in the ambulance to keep him company.
And he takes all this on the chin as he always has done. But he watches
the paramedics closely and asks what they're doing to his brother. He
hangs around the bedroom door shifting from foot to foot as they take
blood, check temperature, test heart rate and monitor sats. He sees the
wires and tubes and masks and blood and needles and strangers
surrounding his baby brother and runs back in to watch Tom and Jerry.
Minutes later he's back. "I'll make a get well card for Hugh mummy" and he gives me a teddy to bring for Hugh.
Phew, it's such a lot for you all to cope with, Emma! Do you have any access to respite care?
Hugh’s
epilepsy causes him to stop breathing for prolonged periods of time often as
long as three minutes but most recently he managed a full sixteen minutes only
taking one or two breaths, which as you can imagine was terrifying. Leaving him in the care of others then, is
something I find quite difficult – I’m always afraid they won’t spot it in
time. What if they go to the toilet or
turn their back on him to have a conversation and miss a seizure? He first started going to respite for four
hours a week when he was about 8 months old, shortly after that he had his
first seizure, although we didn’t know what it was at the time – it took
another 4 months before it was diagnosed as epilepsy. The staff were amazing though and continued
to have him for four hours a week. One
member of staff was assigned to him and they’d sit and watch him for the whole
session. He slept a lot and they would place
a little soft toy on his tummy so they could see it move up and down and be
sure he was breathing. Each morning they
would have a plan of who would commence mouth to mouth and who would ring the
ambulance. It was heartbreaking leaving
him but I needed that time with Sean. He
was only two years old himself and needed some time with his mum. I hated leaving Hugh but knew Sean needed me
too. I found places nearby I could take
him – the park, a soft play area, I was never more than 5-10 minutes away, and
I checked my phone constantly.
As Hugh’s
seizures became more frequent I found it impossible to drive with him in the
car – I couldn’t watch him and drive safely, and so his four hours a week
short-break sessions had to stop. Friends and family were trained in basic life support in an attempt to
have him for a few hours, but he was spending so much time in hospital and I
was resuscitating him so regularly that I daren’t leave him with anyone anyway
and always felt it was far too much to expect anyone else to do that to
him. Once I left the house to get petrol
for the car, I was gone just over six minutes (I timed it) and when I got back
Mum was giving him mouth to mouth. Since
his seizures are classed as life –threatening, we were able to access support
from the local hospice when he was about 18 months old. He’d have day care sessions there, but
initially I’d barely leave his side. Gradually I managed to spend time away from him, first an hour within
the same building, gradually building it up. He’s had a couple of overnight stays there without me recently, though
it still feels odd and I worry about him a lot. We finally managed to get weekly respite organised for him just before
his second birthday – a trained carer would come to the house and sit with him
for a few hours just so I could have a shower or play with Sean in another
room. Up until that point we had coped
by ourselves. I say coped – I’d nearly
reached breaking point! It’s very hard
to stay at that level of high alert constantly. I was mentally and physically exhausted.
Thankfully though, around the same time Hugh's seizures started to become more controlled and we didn’t need to resuscitate him quite so often. Over time I managed to get him back into his short-break sessions (with his carer) and organised for another four hours a week in a special needs playgroup – again with his 1:1 carer. I find it easier to leave him with a trained carer, as I know that he is their sole responsibility and I’ve been lucky that the carers we have had have been absolutely lovely and he’s bonded really well with them.
After a long period
relatively seizure free, we thought we’d put the worst behind us, but he’s had
two hospital admissions in six weeks, needed resuscitating repeatedly and a
cocktail of anti-epileptics to stop them. He’s proved that the risk is still there and that he still needs
one-to-one care. So although he is going
to be starting a special school, where many of the children have complex
medical needs, including epilepsy and there are two school nurses on site, Hugh
will still need his own 1:1 carer. The risks
of missing one of his seizures are too great. We are in the process of organising that now. It’s scary to think that he’ll be away from
me for such long periods of time but I have to trust that other people will
keep him safe. It’s very hard though –
his life is quite literally in their hands.
Thankfully though, around the same time Hugh's seizures started to become more controlled and we didn’t need to resuscitate him quite so often. Over time I managed to get him back into his short-break sessions (with his carer) and organised for another four hours a week in a special needs playgroup – again with his 1:1 carer. I find it easier to leave him with a trained carer, as I know that he is their sole responsibility and I’ve been lucky that the carers we have had have been absolutely lovely and he’s bonded really well with them.
Brothers doing what brothers do |
I've heard an awful lot about SWAN UK this year, how did you become involved with them?
Hugh still doesn’t have a unifying diagnosis to explain all his complex medical needs and developmental delays. Chromosome analysis has indicated a rearrangement of his chromosomes but this in itself isn’t enough to explain his difficulties. Genetics have looked for evidence of anything that might be missing or duplicated in his chromosomes but are yet to find anything. Initially when we were told this, I was devastated. I wanted to know what was ‘wrong’ with him – something I could explain, something I could Google, something that would give me an indication of what the future held. Not knowing was frightening and isolating and I genuinely thought we were the only people in the world without a diagnosis for their child. I searched the internet late into the night, desperately searching for answers until finally I found someone in a similar position without a diagnosis for their child.
At last I knew I wasn’t alone. Some months later SWAN UK was re-established and we both joined. It turned out there wasn’t just one or two of us without a diagnosis, but in fact approximately 50% of children with learning difficulties don’t have a diagnosis. It was such a relief to realise we weren’t alone. The needs of the children all varied but the fact we had nowhere else to belong united us. I took an active part in the group, joined the advisory committee and wrote posts for the newsletter and blog. All these things really helped me make sense of our experiences and hopefully helped other people too. Perhaps more importantly though is the chance it gave me to meet other people who understood the fears and frustrations of our journey. I have made some amazing friends through SWAN UK.
I was delighted to see you and the boys on the BBC One National Lottery a few weeks ago. What was the appeal about?
Emma, I think you're one of the most amazing mums I have ever met. Thank you so much for sharing your story. We'll finish with the poem you dedicated to Hugh.
God Gave Me A Special Child
I am strong
Because my son has taught me to keep fighting
And never give up,
Even when it seems all hope is lost.
I am courageous
Because my son has taught me to trust my
instincts,
To fight for what I believe in,
And not be too intimidated to make my voice heard.
I am humble
Because my son has taught me to ask for help when I
can't do it alone,
To accept the things I can not change
And to put the past behind me.
I am patient
Because my son has taught me that some things are
worth waiting for.
Like that first giggle,
Or a smile.
I am thankful
Because my son has taught me to make the most of
every opportunity,
To appreciate every day,
As if it were our last.
I am blessed
Because my son has taught me to see beauty in the
world around me,
And that happiness, family and love
Are all that are truly important.
God didn't give me a child with special needs
because of the gifts I had.
He gave me a child with special needs to teach me
the skills I lacked.
LittleMamma said
Facebook - Happy Little Hugh
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Emma what amazing story you deal with so much. You are a true inspiration and true warriormum.
ReplyDeleteThank you Wendy xxx
ReplyDeleteWhat an amazing mother you are, I take so much for granted with my two boys. Your boys both sound wonderful. Thanks for sharing.
ReplyDeletesat here in tears...not because of the story but the courage,the beauty and the life within you all xx
ReplyDeleteThank you Maria, they are both wonderful and unique and I am very proud of them both.
ReplyDeleteThank you Ash Stained Boy xxx
ReplyDeleteAnother incredible post and a shining example of a warrior mother just doing what has to be done when the going gets tough, but with positivity and love.
ReplyDeleteSo lovely to have got to know the family behind the avatar Emma.
H
Thank you for sharing this story.
ReplyDeleteThank you H. It was nerve wracking being so open but quite liberating too. There have been lots of positive comments as well which is good.
ReplyDeleteThanks for reading and commenting Mardra