After numerous tests the Doctors informed my husband Michael and myself that our poor little boy,Oliver had been struck down with Encephalitis, cause by a unknown virus that had attacked his brain and brain stems.
However with a lot of perservance and physiotherapy we may regain some of our little boy back.
It’s going to take years and years and even after that, he will still have so much missing from the life he was meant to have, this is why we need as much help as possible, the sooner we can help him more, the better the recovery will be.
Oliver is in a lot of discomfort because he has holes in this brain and brain stem, he has damage in the laminar cortical necrosis in his brain. He is finding it hard to do everything you do in a normal daily routine
Oliver has been struck with Meningoencephalitis.
He has had Lumber Punctures, Cannula Insertions, Electroencephalogram (EEG) MRI scans and CT scans and taking strong medication for seizures, body stiffness and virus infection. Oliver has to have daily Physiotherapy and is seen daily from Occupation health and the Neurological Specialists.
Oliver may find it hard to talk again and he will have to be in a wheelchair as his legs are not working due to the brain damage.
To this date Oliver has had 5 Lumber Punctures, 119 Cannula Insertion, 4 Electroencephalogram (EEG), 4 MRI scan and 6 CT scans and on 6 types of very strong medication for seizures and body stiffness. Oliver has ended up having seizures , Four-limb motor disorder/ Cerebral Palsy with dystonic and choreoathetoid movements.
Click for Oliver's Full Story
In December 2015, Oliver became a big brother to his new little sister Isabelle on the 25th December, Oliver spent time over the Christmas holidays with his family and we all carried on staying with Maggie (Oliver’s Nana) in Southampton for the month of January into February due to a house move and baby Isabelle.
Oliver started a playschool there and made some new friends but Oliver was in and out of colds and viruses. It came to the 14th February 2016 when we all returned back home to our new house in Oxfordshire but when Oliver got back 2 days after on the 16th February he starting vomiting.
Oliver went to see the doctors four times in the 3 days of his illness. He could not keep any fluids down, we were very worried about Oliver so kept taking him to the doctors, he started showing signs of confusion, the doctor told us it was the signs of Oliver being dehydrated but he was not at a dangerous stage of dehydration. They said he had a vomiting bug called gastroenteritis and if he was still not keeping fluids down in the next 6 hours, he would have to go into hospital to go on an intravenous drip, but within those hours Oliver was keeping his fluids down, We thought this was the end of his illness, but it was only the beginning.
On Saturday 20th February at 6pm Oliver was snuggled up under his cosy blanket watching Scooby doo and slowly drinking some boiled water with Dioralyte, Suzanna (Oliver’s Mum) was feeding Isabelle her night-time bottle getting her ready for bed, Mike (Oliver’s Dad), was putting a cupboard up on the wall in the other room, Suzanna was nearly finished with Isabelle bottle and looked over to Oliver to ask how he was feeling, but something was not right, Suzanna put Isabelle down on the floor and got over to Oliver quickly to see that his mouth and eyes were twitching very fast, his eye balls were right at the back and under his eyelids, then within seconds the rest of his body started to shake, Suzanna grabbed the phone and called 999 and shouted for an Ambulance, Mike heard this and came running in, Suzanna remembered Mike picking Oliver up and holding him but the medical operator on the phone said “don’t hold him, let him ride out of the seizure”, Oliver was just shaking even worse at this point and starting foaming at the mouth and biting his tongue, making the tip of it go blue, there was a knock at the door and the Oxfordshire First Response team were there, they went straight into action, 2 minutes after the Paramedics came running through the front door, Oliver starting having another seizure and the paramedic had to give him rectal diazepam and rushed him to the ambulance, Mike went with Oliver and Suzanna called her Mum, (Oliver’s Nana) for help as Suzanna could not take or leave Isabelle, Suzanna was going crazy, crying, screaming running around the house, looking out the window to still see the ambulance was still there, and it was!!!, Suzanna went running over to find out what was going on. Oliver was having another seizure and they needed all the crew around him, which took 15 minutes. Mike was with Oliver when they departed.
As the ambulance set off to A&E, I was sitting at the bottom of Oliver’s bed, the paramedics kept a close eye on Oliver as he was having prolonged seizures. I didn’t know what to think, I was so worried, just staring at Oliver saying “it’s okay, daddy is here”.
The journey to the hospital seemed only minutes but in fact we were in the ambulance for 25 minutes. Oliver looked vacant throughout the whole journey and all I could do was hope.
The ambulance arrived at the A&E doors, Oliver was rushed straight into the emergency room, and I quickly followed. The room was swarming with doctors who came running straight over to Oliver as soon as they saw him. I was watching nearby, I didn’t know what to do; this was my only son, I was so scared that he was going to die.
Doctors spoke to me and explained that they were trying to stabilize Oliver at this point, Oliver then had a massive seizure. There was a lot of talking going on and a lot of machines beeping. At this point everything went quiet, I didn’t know what to do and was rushed with a wide range of emotions. I was really angry and very upset and extremely scared.
The Doctors couldn’t control the seizures and decided the best chance for Oliver’s survival was to put him in an induced coma. I had to leave the room, I thought Oliver was going to die and didn’t know what to do. As I walked out I saw my Mum (Oliver’s grandma) Susannah. I walked over to her and said ‘It’s bad’ and started crying as I received a comforting cuddle from my Mum. Shortly afterwards my Stepfather Tony arrived, I struggled to speak as emotions were now overwhelming me.
Calls were coming in from other worried family members who only at this point got a text saying Oliver was in A & E, They were not to know the severity of it all until a little later.
My heart felt like it had been ripped out of my chest, I began to have trouble breathing and my mind was saying over and over “this was going to be the end of Oliver’s little life”.
I went back into the room where Oliver was, this time with my mum and Stepdad, they wanted to find out information but as soon as they saw Oliver, their faces dropped. Everyone looked on with hope, it wasn’t fair to see him like this and the worst case scenario was haunting us all. It seemed like a life time in that room and Oliver’s mum (Suzy) was still at home with baby Isabelle waiting for Oliver’s Nana (Maggie) to turn up to bring her to Oliver.
Oliver was put into an induced coma, tubes and wires everywhere. A machine was breathing for him. He was moved to PICU, I was still uneasy but Oliver was alive and that was the important thing.
Thoughts going through my head saying he is going to get better, we will soon have Oliver at home again, but at that point we were all to know that wasn’t going to be the case.
Oliver was now on his way to PICU (Paediatric Intensive Care Unit), I was following him as we began the journey of which was just around the corner from A&E. At this point Oliver was now in an induced coma and was currently stable; he was moved into a bed space and was being checked over by the Doctors and a one to one nurse. With me at this time was my Mum Susannah and my Stepdad Tony. Not long after we got to PICU, Suzy, Isabelle (Oliver’s 2 month old sister) and Oliver’s Nana arrived, the first words that uttered out of Suzy’s mouth was ‘Is it bad?”.
We both made our way to Oliver’s bed side. There were tubes and lots of wires connected to Oliver, Suzy just looked at Oliver, her eyes began to tear, then just fell to the bedside saying “WHY?, what has by son done to deserve this?, WHY?” and burst out crying “he looked vacant” Suzy says “but very peaceful” replies Mike, at this time the doctor came to speak to us and Oliver was put on anti-viral medication as standard until they could find out the problem. That night was really hard to deal with; the family were staying in the rest room waiting on word and went to Oliver’s bedside when one of us came out, as only three people could be by the bedside at one time.
Oliver’s vitals were fluctuating alot and required a close eye to be kept on him; this was touch and go throughout the night as many times we thought we were going to lose him. That night we were given an emergency room upstairs where the night doctors stay, as we did not want to leave the hospital, I went upstairs to try to sleep but Suzy wanted to stay close to Oliver, so slept on the sofa in the parent’s room. Nobody had a clue what was going on at this moment in time, a host of tests were carried out, and we were now waiting for the arrival of specialists to see Oliver in the morning.
The next day I was up really early to come and see Oliver, Suzy was already by his bedside, the sight of Oliver was so upsetting but we were trying to be strong and positive, thinking he will be fine in a few weeks. That day we saw the specialists they wanted to run a barrage of tests and one included an MRI of Oliver’s head to see if they could find out what was going on. Still not knowing what was happening to Oliver we were just glad that Oliver was alive.
Oliver did have an MRI that afternoon now we were going to wait for the results which was going to be the next day. That was one of the longest days of our lives; we were so happy that the doctors and nurses were so friendly and really good to us.
The next day loomed and we were given the results of the MRI, at that point I didn’t know what it was, it wasn’t until the specialist came along and brought us into a room located next door in PHDU (Paediatric High Dependency Unit) and went right through the results. I remember him explaining that an unknown virus had attacked the laminar cortical necrosis in his brain and had significantly damaged his brain, when I heard the doctor say severe brain damage I burst out crying. This is not normal for me, but the thought of my first born in this state broke me, I remember thinking ‘why, it’s not fair’. Suzy at this point was strong; it hadn’t soaked in to her yet, so she comforted me.
Telling the rest of the family the situation was very difficult but they needed to know. That was one of longest days that I can remember but again I only have limited memories of the day because it was so hard I have just locked it away. But one thing which has kept me sane throughout this ordeal was doing fitness it was my coping strategy.
Oliver has now moved over to PHDU (Paediatric High Dependency Unit) because Oliver was more stable and no longer required being on the medical ventilator and one to one care. This was a good thing but Oliver wasn’t going through the best of times at the moment.
Honestly this was a 4 days experience and was blurry for me, Oliver’s temperature was rising and fairly high, and so the nurses gave Oliver Calpol which helped his temperature calm down.
He wasn’t doing a great deal of moving and still looked very vacant, he would have screaming fits which wouldn’t last long but we could tell he was not happy, unsettled and even in pain.
Even though he looked very vacant he had improved a massive amount since the past couple of weeks, his eyes were starting to react to the light now. We would sing the daddy finger song to him all the time, this seemed to comfort him, we were not getting much of a response from Oliver but we felt so much better just being with him.
We would just sit beside him till late at night, just to be with him; we missed the lively boy he was so much and wanted him to get better. We were worried he would stay like this for the rest of his life being vegetated, as the doctors expected him to have improved a lot more by now, you could tell they were worried too. But we were strong, and prayed that he would come back to us again.
We are now told that there is a bed for Oliver in Robin’s Ward, he doesn’t require so much care now but we were informed if Oliver has another relapse it would be a very high outcome he would not survive, we were so scared.
One whole month had gone by, Oliver was now breathing and his time at the PHDU (Paediatric High Dependency Unit) had ended. It was time now for Oliver to be transferred to the Children’s Hospital under a Nero Specialist Consultant.
At this point now me and my wife had spent a solid 4 weeks at hospital with Oliver, luckily family came to the aid to help look after Isabelle (see family stories), We felt so bad for not paying her much attention, she was only 2 months old and both her parents were with her brother most of the time, she hardly saw us. But bearing in mind she spent almost half her life in hospital she was a very good happy, contented baby which to be honest held us together more and gave the family someone to help take their mind off Oliver being so unwell, but he was always in there thoughts.
At Children’s Hospital, Robins Ward, Oliver was given his own room right next to the nurse’s station. They were very kind and loving to Oliver, we all liked the team straight away, however the first 6-8 weeks were the hardest in Robins Ward that I have ever had to deal with, Oliver would spend most nights moaning and screaming loudly, he was in pain due to the holes in his brain and all the damage that was caused by the virus, the nurses were in a lot to help Oliver and try to deal with his pain but the medication just did not work. He was still having seizures, which took a while till they were under control. He had neurological pain and there was nothing we could do to help ease his pain. I was by his bedside every night, Suzy was struggling so see him like this and was struggling to keep it together at this point, she couldn’t bare to see and hear Oliver in pain, so it was down to me for now. I went weeks with no sleep each night to very little as the weeks went by. These nights were long, but being there seemed to comfort him a little. Within weeks Oliver was being sick a lot, every time he had his feed he was being sick, he was now losing weight quickly and it didn’t seem at this point he was tolerating his feed, we thought again we were going to lose our son through starvation, they kept changing his feed until they found something that worked, this was a long process and Oliver at this point now was almost skin and bone. He was getting very weak and was having at least 2 or 3 cannulas a day now because they kept failing.
We were all so worried, the doctors and nurses were doing all they could, Oliver seemed to get viruses left, right and centre, they had to give him more anti-biotics. He was still fighting for his life, you could see his determination that he wanted to get better, even though he was slowly improving, he was going in the right direction. All we wanted now was for Oliver’s pain to go and to be comfortable.
Family members saw me after 3 weeks, I was a zombie, they would take turns to stay with Oliver over the night to give me a break, I could go home and have some sleep.
It was these weeks that really worried us but after he started to calm, Oliver was very popular with the play assistants who came in a lot to see him and give us a welcomed 30 minute break. He was now smiling, and started saying ‘Daddy Finger’ (In a way that we could understand) this really put a smile on our faces to it seemed he was getting happier. He was responding well to all his therapies but still his improvements were slow, but “hey any improvement is better than no improvement’s” in my eyes.
I think it was the end of April, Oliver had two operations, his PEG (percutaneous endoscopic gastrostomy) for his feeding so now the tube down his nose and throat can be taken away and also a Fundoplication to make it harder for him to be sick. He started to respond well to his feed, was not being so sick and was now slowly putting on weight, still managing to be a little sick here and there but they were on trial and error, till they found the right feed for him. Bonus, after a couple of weeks all sickness episodes were almost gone, he was moving his legs quite well now, kicking but it’s a start. Oliver had two further operations whilst there, Botox injections and another gastrocnemius release so that his feet would no longer point downwards to give his a higher chance to be able to weight bare again. For the next 2 months Oliver continued to improve but ever so slowly, he put on weight and was now laughing at things and would smile when he heard voices he was familiar with, we were so happy. Oliver had lost so much, if I was to write everything down it would be a massive book because so much happened.
Later after an eye examination we were told Oliver was blind in one eye and visually impaired in the other, he could see some things but what, we didn’t know?
With everything Oliver had been through he was still smiling and laughing, he is one very special little boy.
His next journey was a 4 month stay at The Children’s Trust (TCT) in Tadworth Court Surrey, they are specialists in rehabilitation for children after brain injuries, we were now waiting to go onto the next stage of his treatment with great expectations, just hoping that he will do some of the things he used to.
It was Monday 25th July 2016, it was moving day. This was Oliver’s last day on Robins Ward and we were all so very upset to go, as the nurses and doctors became our friends, we knew we were going to miss them so much, I had started packing Oliver’s things early in the morning, he had so much stuff from being at the hospital for so long we could not fit it all in the car. There were quite a few problems in organizing a room for Oliver at The Children’s Trust (TCT), right till the morning of moving day, but all got sorted in the end.
It was 10am when we were informed that the ambulance had arrived to take Oliver to the TCT, the rest of Oliver’s items were ready to go. Oliver got lots of hugs from the nurses, but most of all from his Play Specialist who found it so hard to say goodbye to Oliver, they had become so close to Oliver it was so tearful for all of us. The ambulance crew came to Oliver’s room to transfer Oliver onto their stretcher, one of the Play Specialist’s helped me take Oliver’s items to the ambulance waiting downstairs at the Children Hospital entrance. Oliver had a final hug at the ambulance from his Play Specialist, there was a single tear in her eye before she said goodbye, she gave me a hug and said goodbye and good luck, I told her we will be back in 4 months and would come to visit. We both got in the ambulance for our journey to the Children’s Trust in Surrey.
It was a 3 hour drive to Surrey the traffic was really bad, Oliver is now at the beginning of his 4 month journey at The Children’s trust (TCT) in Tadworth Surrey. We arrived just after 1pm; it was a new place with new people that we had to get to know all over again. We felt welcomed as soon as we arrived, they took us to Oliver’s room, he had his own room with a TV and they had put character pictures on the walls which was really nice. We got lost in finding the family house which was about a 5 minute walk away, unfortunately there was no tour in where to go on the day but when we found the house there was a shared kitchen and living room which was shared with another 9 families.
The first day was admin, paper work to be filled in, doctors and the nurses came to see Oliver to familiarise themselves with him, so far so good. We arrived during the school holidays so he had limited therapies for a few weeks but was enjoying trips out and we were getting to know the staff and the other families. Oliver seemed his happy self; however he did have disturbing nights for a few weeks from being in a new place.
After a couple of weeks Oliver started school at the TCT, he seemed to enjoy this and his therapies had started too. His first few days of school and therapy were a slow, they were slowly building his program so Oliver got used to it. The one thing I personally noticed is he stopped saying Daddy finger and other words he was saying in Robins Ward after a month or so, they seemed to not concentrate on his speech so much and instead getting Oliver to use switch speakers with other people’s voices for communication.
However he was improving slowly in other areas, they first introduced him back to food, but only as tasters to help him try to get his swallow back as that was unpredictable, in time this would help his speech. Even though he was doing fairly well on tasters there were times that he went downhill, we just really want Oliver to enjoy food and be able to eat again and for his feeding peg to be removed.
During his stay his back strength had improved massively, but again we had seen some children who had the same as Oliver walking and talking and even eating by now. We so much hoped for this for Oliver but this never happened, it seemed evident to us the extent of his brain damage and was going to take a long time to recover to the best it could. As many other children were getting an extended 2 months we hoped for this, but it turned out Oliver wasn’t progressing as fast as thought and he wasn’t offered any more help, this seemed unfair but what choice did we have.
In September we got our new house which was suitable for Oliver, there was still a fair bit of work to complete in the long run, however having the house was a start. With me most of the time at work during the week and spending the weekends with the family my weeks were busy. Suzy would travel from Tadworth to the new house via train and tube through London to get the house all settled, she only had 3 days to do the whole house hardly getting any sleep, then we had to attend school visits for Oliver’s new school placements for when he returned home, it was a very busy time for both of us, luckily again grandparents come to help out.
At the end of October, Oliver received his disability car so now we could take Oliver and the rest of the family out together which was great freedom and what we needed. We also had the transport ready to take Oliver home, which was great; this was only one month away.
We were both looking forward to taking the children home but nervous at the same time. As this would be the first time in nearly 10 months Oliver would be at home with the family again, no nurses nearby or doctors, just us. Luckily TCT were helping us in this transition ensuring that we were ready, making sure we understood his medications and how to give them, and most importantly what to do if Oliver was having a seizure.
The 25th November came fast; it was now time to leave TCT. They organised a party for Oliver so that everyone could get together and say goodbye to us all, but mainly for Oliver who again had made a big impression, it seems his smile is infectious, everyone seems to love him and it was a great feeling to know.
I spent a few weeks slowly taking stuff back so that there wasn’t so much on the last trip but we still managed to fill our car and Nana’s car up, we did have all Oliver’s, Isabelle’s and Suzy’s items this time round.
Me for one was going to be sad to leave this place I got so used to it but now we were on our own again, this is how it was meant to be, we made sure we had everything and left for our journey home. We made some truly amazing friends here, other parents that have been through the same as us and they know what it feels like to have a poorly child, we will never forget them. Oliver is going home, somewhere that again would be totally alien to him, but it is now the family home and it is going to great for all of us to be there, altogether, as a family once again.