10 years and 10 pairs of legs

24th May 2017

Oliver’s mum Karen takes us through the 10 years since her baby son Oliver became ill and explains why, despite the after-effects of his illness and the impact it’s had on the whole family, there are positives to be drawn from the experience

10 years Oliver's blog

5:20am 22 May 2007, something woke me from my sleep telling me to go check on Oliver. We'd come home from holiday the night before and he had a temperature and just wasn't quite himself.

Walking into this bedroom with early morning May sunshine lighting his room I knew there was something very wrong. Above his babygro I could see 'the rash'. I opened the babygro and it was all over him. Small little 'bruise' like marks. 

The phone call I made then to the out of hours GP started a rollercoaster which lasted a long time. . .

By 6am I had him in Daisy Hill, met at the door by the out of hours GP who had already briefed A&E staff. Oliver was taken out of my arms and brought to resus. There are words and phrases that were said to me that morning that as a parent you never want to hear, and things that I thought were literally from the movies, words that will stay with me until the day I die:

“Your son is very ill.” 

“You need to phone your husband and anyone else you think should be here.” 

 “We’re doing everything we can.” 

The staff were incredible

The staff were incredible. I remember a nurse taking me to a room with a phone in it. First phone call to Alan, who had stayed at home with Niamh. Second phone call, to who else but mummy and daddy. My sister I knew was too far to get to Daisy Hill and by then they told me they were trying to stabilise Oliver enough to get him transferred to the Royal. So Michelle was called in to get Alan and the two of them get to the Royal. (It was Michelle’s birthday and I don’t think this was how she had planned it.) 

Mummy and daddy arrived just before they took Oliver to emergency theatre to intubate him. He opened his wee eyes when he heard them, looked up, said "granda", and then they took him away.

A short while later there were more of those words you don't want to hear: 

“Oliver is now in an induced coma.” 

“These are the police officers who will be escorting the ambulance to Belfast.”

“Give him a kiss and tell him you love him.”

I wasn't allowed in the ambulance with him. We followed behind, mummy driving - actually breaking speed limits and driving in the bus lane when we hit the M1 (if I didn't realise it before, I knew then how serious it was!!) Into the Royal where I met Alan and Michelle, who had just seen Oliver being taken off the ambulance a short while before.

World of pain

We were brought then to the family room in PICU of the Children’s Hospital, a room which would become ‘home’ for while. (In that room there was another set of parents in their own world of pain as their little girl was also in PICU. A friendship was forged that day that will last a lifetime).

The doctor who had accompanied Oliver in the ambulance to the Royal was waiting there for us. I asked him honestly to tell me what he thought, to which he said: “He's in the best place and we got him here very quickly which is very important, but I'm really sorry but I've never transferred a child so critically ill who has survived.” I should've learned at that point to stop asking questions! 

Several hours passed before we were allowed to see him, and even then it was for literally 10 seconds and only because the ward sister pleaded with the consultants who were still trying to stabilise Oliver. Another few hours passed and they called to ‘speak’ to Alan and me in the ‘relatives’ room’ – another place I thought only existed on TV.

More of those words:

“Gravely ill.”

“We’re doing everything we can.” 

“Next 48 hours are critical.”

“Even if he survives there is a very high chance there could be serious after effects: limb loss, serious neurological damage, hearing loss, organ failure …”

And all I could say was “I don't care, give him to us in any shape, just give him back to us alive.”

Frozen in time

The next 48 hours were as if I was frozen in time. Daddy, mummy, Michelle and Jonathan ‘sorted’ Niamh so I knew she was okay. That was the limit of my functionality. Relatives came to the family room, our parish priest from home came – Alan always says that’s when he knew it was bad! We had prayers and messages of support from every religion and every corner of the globe, literally. It was incredible and I will always remember through my fog of despair feeling the love and support from all those people.

There’s no way to describe those 48 hours. I tried to ‘bargain’ with the consultants at various times that surely after 12 or 24 hours then it would be okay? No, 48 hours were critical they kept telling me. I asked one doctor after 24 hours what were his chances? He didn’t want to say, he very obviously didn’t want to say, but being a numbers person I pushed and eventually he said: “At this stage it’s difficult but in my experience of seeing cases as bad as Oliver, only around 10% would survive being this critical with this disease”. As I said, I should have learned to stop asking questions. I don’t even know when it was that anyone ‘confirmed’ his diagnosis of meningococcal septicaemia – I don’t know if it mattered at that stage.

Out of the woods surely?

And then the 48 hours had passed and he had survived. We were out of the woods surely. Well, yes, he’d probably survive now, fantastic, that’s all we wanted wasn’t it? But then the goalposts moved slightly – will he be ‘okay’? What is the likelihood of permanent damage? We were continually advised that Oliver was so ill that it was unlikely that he would come away unscathed, it was going to be a question of ‘how much’.

In the days that followed it became very apparent that outwardly the damage to Oliver’s feet had been most severe – this is partly because of how ill he got so quickly (with a bp of 32/20 when he was in Daisy Hill) and partly because of a juggle to focus necessary medication on the core of the body, the heart really, but this restricts blood to the peripherals. Increasing blood supply to the peripherals put the core at risk. A continual balancing act, with medications being constantly reassessed. At one point Oliver had 15 syringe drivers delivering much-needed meds to his little 21-month-old body.

Day 9 we were advised that they would start to bring Oliver out of his coma. This was the biggest test. We had no idea what neurological or sensory damage had been done. Slowly the sedation meds were reduced and slowly his eyes started to open. He looked at Alan and me and we could instantly see he knew exactly who we were. This is such a simple thing but when you’ve been to the darkest of places as a parent, having your baby know who you are is all you need. Within a few hours Oliver was alert and had eaten the top of an ice lolly. 

However, despite the best efforts of an amazing team of medical staff, it was obvious that Oliver’s feet and his fingers were not going to heal.

Surgery a success

Flash forward to a couple of weeks later and Oliver underwent eight hours of surgery to remove the lower part of both of his legs and the fingertips on three fingers on his left hand. The surgery was a success, they had managed to keep both knees, something we now know was so important to his future. The surgery for amputations, as incredible as it might seem, was almost a relief because we had accepted at that point that they weren’t going to get better, and we could see that he needed the surgery in order to start the whole body healing that he much needed. And he did, less than four weeks after his surgery he was home, where he belonged.

And now 10 years have passed, and we’ve been through 10 pairs of prosthetic legs, countless hospital appointments, one further surgery, many ‘lows’ and a lot of ‘highs’. I remember my sister saying when Oliver was still in hospital, that he was lucky to have us as parents because we were such eejits that we wouldn’t wrap him in cotton wool and would be encouraging him to do anything and everything – I think she meant it as a compliment?!? Whether she did or not, she was right (she normally always is!) We have always encouraged Oliver, just as we do with Niamh and Clara, to try everything – you name it from swimming, to gymnastics, hill walking, golf, athletics and running. If he liked it he’s continued doing it, if not he moved on to the next thing. Who knows what he might take up next?

Plenty of good things

Ten years later we have a healthy son who knows he is ‘disabled’ but does not see himself as having any disability. Life is not always easy for him, and it won’t be; this is something we will deal with together with him, but there are plenty of good things about his life. This weekend he found out he will be going to the grammar school of his choice Banbridge Academy, having worked hard for his transfer test. This week he will run the Banbridge 4k fun run in his running blades - he might even overtake a few of you! He is funny, handsome (not biased), intelligent, strong, sensitive. He is also filthy, at times lazy, obsessed with ‘screens’ and devices, annoying – a pretty ‘normal’ 11-year-old boy I’d say.

Having a child be so ill is every parent’s worst nightmare, but I’m a firm believer in things happening for a reason. I have no idea what the reason was for Oliver to have had to suffer the way he did, but I believe my life now is actually better for the lessons it has taught me. I’d never say that if I could turn the clock back I wouldn’t – of course I would – but I am constantly reminded when I look at Oliver at how precious life is, how precious family and friendships are. I have an amazing family and fabulous friends, and I’m grateful every day for that. I know we’re being looked down on by a couple of very special angels who continue to guide me as they would when they were here with me. I can think of turning the clocks back, but then as Oliver himself said today “what would’ve happened if you didn’t check on me at 5:20 that morning?” – that’s not something I like to think about too often!

We realised a long time ago that we’re the lucky ones; we got our baby back. Life doesn’t have to be perfect to be perfect.