WARRIOR MUM - EMMA MURPHY'S JOURNEY

Undiagnosed son with a severe learning disability, Medically Intractable Epilepsy, Swan UK

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.

On holiday in Ireland with Mum, Dad and 2 brothers

I was born in Birmingham in the late 70s to Irish Parents. I was their second child; their first, my sister, died in infancy just two years earlier. My three younger brothers and I had an idyllic childhood. Most of it seemed to be spent playing and having fun.  Each year we’d spend our six weeks summer holiday in Ireland, we seemed to be outside all the time – I’m sure it never rained!   

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.  

My Graduation in 1999

 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. 

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. 

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.

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.

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.

Once again though my baby fought back. 

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? 

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. 

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. 

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 what a bag and mask is for?

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. 

He knows we won't be home tonight.

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.  

Brothers doing what brothers do

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.

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?

The charity Genetic Alliance originally received five years funding from the National Lottery Big Lottery Fund which they used to re-establish the project SWAN UK.  As a result of the amazing work they’ve done, SWAN UK was shortlisted as one of seven finalists in the health category of the National Lottery Awards. Having the chance to represent SWAN UK in a short video that aired on the National Lottery show on a Saturday night was an honour. I was nervous that I wouldn’t be able to do them justice, to show how much they had helped us and people like us.  It was all very exciting though. Although SWAN UK didn’t win, it all helped to raise awareness of families living with undiagnosed conditions and highlighted the support available. 

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.

Twitter

LittleMamma said 

Facebook - Happy Little Hugh 



@copyright No part of this blog can be printed without the author's permission