By Share Your Wishes, Nov 30 2020 06:41PM
Reading articles about others experience of losing a child prompted Viv to share, in her own words, about her oldest child, and her only daughter, Katie who sadly passed away ten years ago. Katie died suddenly from a brain haemorrhage in December 2010 aged 27.
“Katie had been suffering from sinusitis on & off for several weeks, this in itself wasn't unusual as she'd suffered from the affliction for many years. This time though she suffered from severe headaches which got so bad she attended A&E, in the hospital where she worked as a phlebotomist, they gave her pain killers and advised her to see an eye specialist, 2 days later feeling no better she asked me to drive her to see her GP, extremely unusual for the staunchly independent Katie.
The advice on both occasions was to treat the sinusitis symptoms & that the headaches & vomiting were associated but would need investigating if they continued. They were right it turned out, but what no one realised was that the sinusitis had led to a brain abscess which caused a blood vessel to rupture and Katie's very premature and devastating death.
My (Katie's) story begins on the day (15th December 2010) that we visited the GP. I can still see her pale face, green coat & black hat shoved on to hide tatty bed hair as we sat in the waiting room.
I was concerned for her pain but not unduly as it occurred quite frequently, only the week previous she'd battled it for a Christmas night out with her girls, she suffered the following day though with one of the worst hangovers she'd ever had.
Back to the GP visit. The young lady GP checked Katie over, giving her quite a thorough examination and prescriptions for various pills to control the headaches & associated vomiting, with the promise of those further investigations if it continued. We visited a local store & pharmacy to collect the pills & wandered around a little before heading home with Katie choosing a magazine, some lunch & some lovely long socks and other treats for her Christmas stocking. A normal situation, apart from her looking pale & peaky, with still no cause for great concern.
On returning home we had lunch & decided to watch the most recent of the Twilight films, Katie's favourites which she'd been nagging me to watch so much I'd given in & watched all the earlier episodes ready for this one! Part way through the film Katie said she was going back to bed as she felt unwell, taking the new pills in the hope they'd help. She came back down about an hour later for a drink & asked what I'd thought of the film. I told her I'd stopped it as I wanted to watch it with her another time. She returned to bed & I popped up to see her at intervals holding her hair & rubbing her back as she vomited, wishing she could stop long for the pills to have effect & googling her symptoms in case there could be something else we'd not thought of.
Phil came in from work as she I was preparing tea & could hear her upstairs vomiting, "I wish I knew how Ill she was ”I said to him, Katie's illness threshold was usually not very good to say the least & she could be a bit of a drama queen with the mildest of symptoms! Phil went to see her, comforting & supporting her as she vomited and making her comfortable in her brother's bed, nearer us & the toilet as her bedroom was another floor up. See, I still wasn't overly concerned.
Throughout the evening Katie dozed on & off vomiting at intervals but at least that seemed to be subsiding. I encouraged her to have fluids but in the main we left her to sleep thinking this would be therapy in itself. Around midnight as we went to bed I checked her again, worried that the symptoms had lasted so long but convincing myself that she probably had the dreaded winter vomiting virus which was doing the rounds.I was however becoming more concerned.We discussed whether or not to call the emergency Dr and, convincing myself they'd probably agree with my diagnosis & recommend I did what I was doing, we decided to contact them in the morning if there was no improvement & I set my phone alarm to wake me 2 hourly to check on her.
From there the horrendous timeline starts:
1:30. Sleeping lightly, due to my concerns I guess, I heard her vomiting and went to assist her, giving her some water helping her to the toilet & to settle again.
4:00. Woken by alarm I went to check on her, she seemed more settled although she had vomited a little again. I asked if she felt better & she just nodded, half asleep, I propped her onto her side with pillows feeling slightly relieved things were improving a little.
7:00. Phil got up for work, I went into check on her leaving the bedroom light off with just the landing light to see by. She'd rolled away from the side I'd left her on and I went to her saying " how are you this morning chick" gently pulling her back towards me so I could see. She lay on her back looking up and in the dim light I could see that her face wasn't right, her left eye looking swollen shut. Confused by what I was seeing I asked her if she could open her eye & she did so using her hand....now I'm starting to be really concerned.
I grabbed a facecloth from the bathroom thinking maybe her eye was sticky & put the light on so I could see. I opened her eye myself surprised & shocked to see she had a very large pupil, at the same time realising she's not really responding properly. I called Phil to come "....am I seeing what I think I am?" He just nodded looking perplexed & scared, mirroring I'm sure my own demeanour.
He rang the ambulance while I ran upstairs for clean pyjamas, she'd wet herself & I knew she'd have been mortified if I let her go to hospital like that. I freshened her up, putting clean pants on her & she lifted herself to assist me, still not really grasping the situation as being critical and in nurse/ automatic pilot mode. I somehow rationalised that a vessel had popped in her eye due to the vomiting!!! Approximately 07:30 the ambulance crew arrive & I stand helplessly watching them assess her, noting that her blood pressure was ok, temp slightly raised & relaying this information to Phil....majorly concerned but her vitals were ok right? She must be ok right?
I travelled in the back of the ambulance while Phil brought the car, lights & sirens. "You know it's standard procedure Viv for all head injuries", did she have a head injury? I just couldn't equate the information, the nurse in me squashed and made incapable by the frightened parent. Sitting beside her pulling at her oxygen mask, restless & incoherent I thought " just wait until I tell you about all this drama you've caused!" Concerned? God yes, panicking, frightened, confused but never once grasping the situation.
On arrival at the hospital (where we both worked and where only 2 weeks, I'd been treated for pneumonia with Katie supporting & worrying about me) she was rushed into resus, & I was asked to wait outside for a moment. A good friend & colleague saw me as she arrived for work ( must have been 8:30 by now but time was just standing still for me), crying my first tears I told her the situation and she stayed to support us & contacted our other friend who arrived in moments. I can reminisce now & see the look in their eyes, the sympathy, understanding acknowledgment of the situation, I wasn't getting it yet.
In resus it was clear Katie was deteriorating, her eye wasn't bulging anymore but her confusion was growing & her movement seemed to be reducing. I still didn't grasp the situation, looking back I don't know how I could not have known but I truly didn't, it felt like I was watching a film, one which started when the ambulance crew arrived and one in which I had no part. Bloods being taken, drips inserted, investigations ordered, machines bleeping, nurses panicking ( I could hear that, they were her friends & colleagues as she'd worked in A&E previously) stabilising her as well they could prior to her brain scan...at least we'd know what we were fighting now....
sent Today at 16:50
Meanwhile my friends are trying to contact our sons, Chris in Thailand with no phone and Nick at uni with no phone signal but thank god for social networking sites.
By now we're in a tiny little visitors’ room, the same one I'd seen my sister sitting in 18 months previously when her son had died. Ginette was with us, I rang family to tell them the situation...Phil looked lost. The Dr came into the room with the results of the scan...." massive bleed on the brain, inter cerebral, white on scan, serious" words, just words, they could've been a foreign language. He was very good apparently, told us the situation just as it was, didn't beat about the bush, presumed that as sister of a rehabilitation ward I'd know what he meant...the nurse in me was well & truly squashed by now, I just wanted normal words and someone to tell us what her chances were.
You see, I'm beyond concern or comprehension at this stage, no panic, just devoid of emotion, I can remember asking Phil if he understood what the Dr had said, when I really didn't understand myself.
We stood/ sat/ drank tea in that room shell shocked, still bit players in a big drama, not involved but on the outskirts watching, 2 parents stunned & feeling totally useless & helpless in a terrifying situation:
Katie was transferred to ICU, I forget the timeline now it's hazy & unimportant.
We were kindly & gently led to another little visitors room, this one nicer, softer, with comfy sofas alongside the compulsory tea machine, but it's purpose just the same, a holding bay for family in peril, a parallel universe where time stands still.
My Mum arrived with my sisters, Phil's mum & brother, Elizabeth & Ginette, all huddling wondering what was happening. By this time, they'd managed to contact our boys & asked them to ring me, so could relay the news that their big sister was critical, how the hell did I do that?! Nick says I just told him it was serious & to wait for news, Chris in Thailand was told the same & to get home quick, I can't remember in detail though these conversations, some things I guess are too hard to recall.
We were allowed into see her, restless still, not really conscious. Still my Katie though.
Decisions were made after much discussion to transfer her to the Walton neuro centre in Liverpool. By this time, it's about 12 midday, we know now the delay was because Walton didn't feel she'd benefit from being transferred because she was too poorly & they couldn’t do anything to change that.
For us waiting on news & those decisions it was torture, Phil overheard someone talking on the phone about the weather & suitability for flying & was distraught that such things could be responsible for his daughter's welfare, he hated living on an Island at that time & I think he still does.
We were visited by senior managers (as I said earlier Katie as a phlebotomist was one of their own as I was too as a senior Ward Sister) reassuring us that everything possible was being done.
To help Katie in transfer they told us that they would have to put her on a ventilator for which she'd need sedating, we took turns to see her for a few moments before she was sedated. My sister Julie came with me to her bedside, I couldn't stop the tears as I looked at her precious face still showing signs of confusion. I talked to her, told her what was happening & that was we'd see her soon, I even admit to praying although I did that when no one else was there. Julie commented on how beautiful she was and what a good Mum I was......I didn't feel it.
Once she was sedated and out on the ventilators, we watched her leave her in the care of the inflight team, charge nurse Dave promising to contact me as soon as they arrived at Walton. I can remember saying " please take care of her' as they left. Phil & I headed home to pack a bag for our flight to Liverpool later that afternoon (4pm) , hardly speaking on the journey home. Neither of us daring to discuss possibilities or scenarios. I grabbed a bag of things for Katie, toiletries, nightwear etc and her precious phone which she was bound to need. Pausing in the hall before leaving the house we looked at each other, Phil finally speaking first cried "she can't die, she's got to have a baby". She had her tarot cards read 2 weeks earlier and she was told she was about to meet the love of her life & have a baby. We hung onto each other sobbing before leaving the house which would never be the same again.
Phil's brother drove us to the airport, panicking because the weather was about to change & snow was coming in. We sat in the departure lounge surrounded by happy people going on holiday for Christmas still not believing the situation we were in & trying to eat, something we'd not done since the night before, strange how your body can function without food, we weren't even hungry.
Sometime around now (again time just had no meaning) I received the promised call from Dave who told me that Katie was at Walton. I asked her if she'd been ok on the flight & he responded " the flight was ok" I didn't realise at the time why he'd avoided my question & we were just relieved she was in the best place for her condition, allowing ourselves to breathe a little and prepare to support her after she'd been to theatre to have the pressure relieved from her brain which we'd been told was paramount. At this time I'm still numb, the whole situation still feels surreal and I'm bargaining in my head with God to please let me keep her, whatever conditions she's in, just let us bring her home where we can look after her. Phil & I look out of the taxi window lost in our own thoughts.
We arrived at Walton somewhere around 4:30 I guess, racing through corridors & sets of security doors (so frustrating to be stood buzzing an intercom knowing your daughters on the other side of the locked door & no one's answering it!) When we eventually gained access, we expected Katie to be in theatre or at very least being prepared, she'd been there about 2 hours by now, we were allowed to see her, still sedated & ventilated with tubes & wires everywhere.
We were then shown into yet another visitor's room, this one the starkest by far and sheared by everyone in the unit. After what seemed like hours, but must have only been a few minutes, the door opened, and a team of doctors & nurses entered. The consultant introduced himself & immediately informed us that Katie's other pupil had 'blown' ( caused by increased pressure on the brain) before she'd even left the Isle of Man and that there was no hope, there would have to be a reduction in sedation overnight to see if the there was any brain activity but for all intents & purposes that was it, our gorgeous girl was gone. As I write this I'm back in that moment, tears falling as we realised the fragment of hope we'd had was gone & she was never coming home. Me asking Phil if he understood what had been said & him just nodding, we were both just so numb. I hadn't expected this at all, wasn't prepared for it, it wasn't meant to happen we had been unable to protect our girl.
After contacting our families to update them with the devastating news the rest of that day was spent sitting by Katie's bedside, touching her hands, face, hair trying to absorb everything, her very essence. She was warm, looked like Katie but just asleep, it was so surreal & I can't put into words the devastation & sadness I felt. Phil just stood & cried looking bewildered & shaking his head in disbelief. It's heart wrenching to see the man you love so distraught & be unable to comfort him because you're in the same place.
Nick arrived from Sheffield later that day, I was blown away by his resemblance to Katie, I'd always known they were alike but for some reason it was even more apparent. He says he knew it was bad news the minute he saw us. I'm again unable to recall the conversation we had with him, vividly etched in my mind though is holding him while he sobbed at Katie's bedside, they were so close & he looked up to her while she looked after him, she'd only recently been to see him at his uni, taking him shopping to stock his cupboards for him and buy loads of toilet roll which she was amazed to find he'd none of!
There were no rooms available for us nearby, so we spent the night in that visitor's room, Phil on the floor, Nick & me on chairs None of us slept though, talking about Katie, partly hoping for signs of brain activity and at the same time dreading it because it would mean they'd have to treat her whatever her condition. Whilst I'd tried that bargaining with God about keeping her in any way, shape or form, in reality we knew she'd have hated being trapped in a useless body or a persistent vegetate state, our thoughts & emotions were totally torn. The one thing we did discuss was organ donation. Phil broached it first, I'd thought about it too, we knew it was what she would have wanted, and we all agreed to go ahead in that situation. It was still very surreal, whilst the heart's still beating a person is still alive so, although we knew she was clinically dead and were discussing organ donation, we had to wait for the outcome of reduced sedation before it was official.
The next morning, we were informed that, as they'd thought, there was no brain activity and they would conduct brain stem tests later that day. By now we were totally numb, tears not falling & emotions in check while we tried to deal with the enormity of the situation. My brother & some of Katie's friends arrived & we sat in that room & talked about Katie, and all sorts of irrelevant rubbish , somehow avoiding the obvious elephant in the room, taking it in turns to sit with her.
The brain stem tests were conducted that afternoon and the Team came to the visitors room to see us with the results, removing other visitors to give us privacy and the news that Katie hadn't responded to any of the tests and was declared dead with only the ventilator keeping her 'alive'. We already knew what the outcome would be, Katie had begun to look different & we could see that the essence of her, what made Katie Katie, was no longer there. I felt as though they were just executing their formal & legal duties, ticking boxes, although they did it very kindly & respectfully, before raising the topic of organ donation. As we'd already discussed this we agreed immediately and, after a respectful few minutes left on our own the transplant coordinator came to see us to discuss the procedure & practicalities, the transplant team would prove to be the most amazing support at that time & in the months ahead.
I still don't know how we dealt with this so soon, even though I totally understand why it had to be a quick decision. By now (we were informed) Katie was at risk of cardiac arrest due to her condition & that would render the organs useless, so plans were put into place rapidly to do all the tests necessary prior to transplant. One of hardest things for me was seeing nursing staff take blood knowing they were no longer working for Katie but in the interest of the recipients.
We spent as much time as we could with our lovely girl, I needed to hold her hands, touch her hair, connect as much as possible before she was taken from us forever. So much had happened in a few days, it was Wednesday when we had that GP visit & it was now Friday, yet it felt like weeks.
My now concern was for Chris coming home from Thailand, drunk & distraught he had somehow managed to book a flight (it was the week before Christmas, so demand was high) which was due to arrive in London the following morning. The threatened snow had arrived in abundance & I was really concerned that the plane wouldn't be able to land, or the trains would be grounded. We had tried to prepare him for the likely outcome but knew he just hadn't really grasped or accepted it. I still can't begin to imagine how it was for him dealing with all this on his own (apart from his good friend) on the other side of the world. He was due to arrive around 6am and the transplant procedure was scheduled for around 11, we hoped & prayed he would arrive in time to see Katie before she went to the operating theatre.I was also concerned that everyone knew Katie had died apart from Chris as he was airborne when we were given the news, I feared that somehow he'd find out before we could tell him via Facebook or some other electronic means. Phil & Nick eventually convinced me that as he was flying, he'd have no contact with anyone until he landed & rang us.
By now we were physically & mentally exhausted having spent 2 whole days & a night in the hospital and managed to get rooms in a nearby hotel. Leaving the hospital felt surreal. The snow was thick & it was freezing cold, clear & beautifully Christmassy. I wanted to scream & shout at the injustice of everything, but I didn't, and still haven't really to this day released the scream that sits like a bubble in my chest.
Where are we now? Oh yes Premier Inn at Aintree, forcing ourselves to have some food, our mood somehow lighter than it had been all day. We've discussed that since. How could we sit in a bar eating, talking normally, drinking wine, throwing snowballs on our way back to our room? I really, really don't know, we felt utterly wrung out & maybe just needed some normality. We tried to sleep, well Phil did bless him, he could sleep on a rock! I struggled, waking with a jolt frequently back into reality & tears. Sometime in that night I woke with a start & panic, sitting bolt upright I woke Phil up saying "she doesn't know she's dead" and the tears started again.
Around 7am we had the call from Chris telling us he'd landed safely and was on a train to Liverpool. His first words to me were " I know Mum", he'd turned his phone on during a scheduled stop (I hadn't thought about that possibility) to read a text " I'm sorry about your sister, she was a lovely girl...." The 'was' said it all & he needed the support of air hostesses the rest of his journey, I felt so bad for him & could have kicked myself that that could have happened. He expected to be with us around 10am, we asked him if he wanted to see Katie prior to the organ retrieval, he decided not & would instead see her after the operation when the ventilator would be removed. I couldn't hug him tight enough when he arrived, tired & surprisingly not showing much emotion, he told us that the hostesses had looked after him & had to help him off the plane when it landed. The first thing he did at the airport was to find a computer so he could check Facebook, I guess he was all emotional out after reading the messages on his & Katie's wall.
We had several hours before the operation would be completed & spent more surreal time wandering round Liverpool shops, full of eager Christmas shoppers with Slade or Wham wishing everyone a wonderful Christmas and us in our own world of grief, God knows how we did that.
Around 5pm back at our hotel we contacted the transplant co-ordinator who informed us that that Katie was ready for us to see her. She was in a different part of the hospital off the theatres, no longer needing ICU. Now we really knew she had gone, until now she'd been warm, still 'breathing' and we could pretend she was still with us. Not now though, I was totally unprepared for how she would look, crazy as I'm a nurse, and felt sick to my stomach and so deeply saddened at the loss of our lovely girl. Most of the tubes had of course gone, some remaining until after post-mortem had been conducted. We all sobbed, Chris especially hurting so much seeing his sister for the 1st time in months.
The following day we returned to the Isle of Man, to a home where, only 11 days previously Katie had put a Christmas tree up ready for my return from hospital - we stood together in front of it as if it was a symbol and just wept.
Christmas hasn’t been the same since. For the first two years it didn’t happen in our house at all, then gradually I realised I wanted to acknowledge, if not celebrate it. We’ve coped by changing family traditions, we always had Christmas Stockings, even as the children grew older, they still loved them, we don’t have them anymore. I can’t go to church, Carol services etc as they’re just too hard and emotional but we enjoy family time with the boys and our extended family. Katie had always put the angel on the tree, her job from being a toddler lifted up by her Dad, a job so fiercely guarded we had to buy a star when she was travelling one Christmas as she wouldn’t let us put the angel on without her. We don’t have an angel on our tree anymore
We’re extremely proud that our happy, funny, caring girl gave life to others in her death with 6 people benefiting from her organs. One little boy asked Santa for a new liver and got his wish. I wish we’d got ours.”
Please #ShareYourWishes about your organ donation decisions with your loved ones.