Infection related deaths: Personal stories and case studies
The following personal stories and case studies highlight both the lived experience of parents whose children have been affected by infectious diseases, and professionals who have developed successful approaches to alleviating the burden of such diseases and improving and saving children’s lives. The stories are shared with the kind permission not only of the families, but with our partner charities for this report: The Meningitis Research Foundation, The UK Sepsis Trust, Meningitis Now and Group B Strep Support.
2. Personal stories
Back to contents
Oliver was 13 years old when he tragically lost his life to sepsis on 3 January 2020.
Oliver and his family had spent Christmas 2019 celebrating in New York. They’d all caught colds on the flight over, but dosed themselves up and enjoyed the sights and their time away together.
On the day they returned to the UK, Oliver was still very poorly. He was lethargic but assumed it was down to the long flight back. Less than 24 hours before, he had been running around Central Park, climbing rocks and being his usual self.
The following morning, Oliver woke up with a rash on his feet, and was suffering from vomiting and diarrhoea, and was rushed to A&E. He had sepsis – his organs were failing, his blood pressure had fallen dramatically, and he very quickly deteriorated. He suffered a seizure and went into cardiac arrest.
After the doctors and nurses brought him back, his family were given the devastating news that he was gravely ill, and the only option was to transfer him to Southampton PICU to go on their ECMO machine (which temporarily replaces the function of the heart and lungs). They were told that if Oliver survived, he would lose his legs.
His family spent three days of watching machines keeping Oliver alive, receiving different information all the time. They sat and hoped, holding his hands.
Sadly a scan showed that Oliver had suffered a stroke that had caused irreversible swelling of his brain. His family had to say their goodbyes.
They said “We are incredibly grateful to everyone at Southampton PICU for giving us those three days with our beautiful boy. It was an incredibly unfair way for us to learn about sepsis and how utterly devastating it can be. By sharing our boy’s story, we can only hope that someone sees it, learns the symptoms and never has to say goodbye to a child.”
Oli first became unwell on the evening of 22 May. We had put him to bed as normal after his bath and bottle and although he initially fell asleep he woke up a couple of hours later, unhappy and hot. As we tried to give him Calpol to help with his temperature, he was immediately sick. Although he stayed hot, he stopped crying and we put him back to bed again. He remained unsettled during the night, but I wasn’t unduly worried.
The following day, he seemed brighter in himself, and he no longer had a temperature. We were due to spend the day at a friend’s house and as Oli seemed better I didn’t cancel these plans. All day though he refused his food, and drank much less from his bottle than he would normally. He also slept for longer during his normal naptimes, and it was clear he was obviously still feeling unwell.
I put him to bed early and he fell asleep quickly. Tom was out that night, and having got the twins down at a good time as well I thought I was going to have a nice quiet evening. But just before 9pm, I heard Oli crying. He was again very unhappy and very hot. I was worried about him as I knew he’d had reduced fluids that day and I wanted to get his temperature down quickly. But again, when I gave him his medication he couldn’t tolerate it and was sick.
I called my dad (a retired GP) to ask for some advice, and he suggested that it was likely that he had an infection and it was therefore probably better to get some antibiotics into him sooner rather than later if this was the case, and that I should therefore take him to A&E to get him looked at. We are not the sort of parents who take their child to the doctor unless we’re really quite concerned, but I was. I was so worried in fact, that as Tom was out I went and asked for our neighbours help in babysitting the twins so I could take Oli to A&E without delay.
It took a while to be seen in A&E, and when they took his observations he was noted to have both a significant high temperature and raised heart rate. They gave him some paracetamol and a few hours later we were discharged home, with a diagnosis of Oli having a virus. We arrived home at about 2am in the morning. Tom was waiting up for us and we put Oli to bed straightaway. He was quiet all night long.
That morning of 24 May I was due to meet a friend to go shopping. I left the house just after 8am and I remember being surprised that Oli wasn’t awake, but I put this down to his late night and assumed he simply hadn’t had enough sleep. He didn’t feel hot to the touch and I was happy that he didn’t appear to have a temperature. Tom woke Oli up at 9am. We’d had instructions from the hospital to keep his temperature down and his fluid intake up, so Oli had further paracetamol and although sleepy while he had his bottle, he drank the full contents. He didn’t cry or appear unhappy, just very tired, and after his bottle he fell asleep again.
I came home at lunchtime to find Tom having a cuddle with Oli on the sofa. I was immediately struck by Oli’s skin colour, which seemed very pale, and he almost looked jaundiced. I remember being concerned but Tom and I rationalised our fears, knowing that he had seen a doctor less than 12 hours previously and that we were following all the advice we had been given. We were surprised how much he was sleeping that day, but we just thought that he must be feeling terrible in himself and that he was obviously most comfortable sleeping off whatever illness he had.
Later that afternoon I woke him for a feed. He wouldn’t really make eye contact with me, and seemed to stare through me. He still had no temperature, and took his full bottle of milk. I actively tried to keep him awake and he managed this, but he obviously wasn’t happy. He never cried, but he wasn’t himself.
My dad came to stay with us that afternoon. Oli managed to give him a half smile, but my dad noticed that Oli’s breathing rate was faster than normal. He also felt his fontanelle and believed it to be raised. At this point I immediately left the house with Oli to take him back to A&E, which was 10 minutes away, leaving Tom and my dad to look after the twins.
When I checked into the reception and told the lady Oli’s symptoms we were rushed into the Resus area and I heard a paediatric emergency alert go out over the Tannoy system. Suddenly what had been an empty room was filled with about 10 people and I was left watching while they started to work on Oli, obviously getting fluids and drugs into him. I was told that somebody would come and speak to me as soon as they could, but they needed to concentrate on Oli for the moment. I was advised that I should call Tom and get him to the come to the hospital as soon as possible.
It was evident that Oli was very seriously ill. I could see that he was fairly non-responsive and due to his raised fontanelle, I believed he must have meningitis. The doctor confirmed this was the basis that they were working on and that they had started him on the treatment for this disease. We were told that due to the severity of Oli’s illness that they would be calling the paediatric intensive care retrieval team, as it was likely that Oli would need to be transferred to another hospital with a paediatric intensive care unit. We were also advised that to ensure Oli could be given the best possible chance they would ventilate him to allow his body to rest. We asked the doctor if Oli was going to die and were told that he was a very sick little boy. The look on the doctor’s face told us everything we needed to know.
Before they ventilated him, we had a few moments with him by ourselves, and I remember stroking his head and whispering to him “Mummy loves you”. He opened his eyes and made direct contact with mine. It would be the last time I would ever see them.
We were put into the relatives’ room while they ventilated him, and after 20 minutes we were allowed to be with him again. By that time the retrieval team had arrived and we were comforted by the fact that he was receiving the best possible care. We were both able to travel in the ambulance with him to the Evelina Hospital, something that we will be always grateful for.
Oli remained on full ventilation throughout the night in the paediatric ICU. They attempted to lessen his sedation in the early morning but Oli struggled to tolerate this. Tom returned home that morning to check on the twins, and to pick up a few things for us while I stayed with Oli. When he returned a few hours later and spoke to Oli, Oli moved in response to Tom’s voice. It was the first movement we had seen since he had been ventilated.
Oli began to deteriorate in the early afternoon and had an urgent MRI as he wasn’t responding to the treatment as expected. Although the first results of the MRI were positive we were subsequently told that Oli had suffered a severe hypoxic brain injury. It was the most devastating news to hear, but the doctors said they would continue to monitor and treat him and hope for improvement. We didn’t know what to do with ourselves and went for a walk to get a coffee. On our return to the unit we found a nurse on her way to find us. Oli’s condition had deteriorated further and she told us not to be concerned by the amount of people and activity going on around him.
I remember stroking Oli’s head and registering how cold it felt. After some time, the staff stopped working on him and told us that the consultant would be doing a few more tests and would then come and chat to us. We watched in silence as he did this, but with the growing realisation that the news we had feared was about to be confirmed. And it was. Oli was confirmed to be showing no sign of brain activity and that it was now only the ventilator that was keeping him alive.
Tom and I then together made the decision to turn off his life support. A decision that no parent should ever be faced with and one which we will never forget. It was clear to us though that ‘our’ Oli, our perfect 7-month-old little boy, had already left us.
Oli was subsequently found to have died from pneumococcal meningitis. Despite being fully vaccinated he died from one of the strains for which there is currently no vaccine.
In the seven months that we were so blessed to have Oli in our lives he brought our whole family joy, happiness and laughter. The impact of his unexpected death is something that cannot easily be explained. Quite simply it devastated us and changed us all forever. We will never understand why he died, though our grief has changed over the years, it has never lessened, and we continue to hope that something positive can come out of the journey that we find ourselves on.
Meningitis is life changing. It stole Oli’s life – who knows what future he should still be fulfilling. For his older brother and sister it took away their childhood innocence. Only time will tell the longer-term impact of them losing their adored baby brother when they were only 4-years-old. For our youngest daughter, she will forever live in a world knowing she had a brother whom she never met. For our family, forced to watch Tom and I in the darkest of places whilst also grieving their own huge loss, it changed everything. For friends, desperate to help, yet powerless to, it forced them to have new perspective on life.
Nothing will bring Oli back to us. To the outside world we are ‘strong’. To a stranger looking in our lives we probably look like we have it all. A happy family of five, a dog, a house that feels like a home. But we are good at fooling people. We smile, but we want to cry, we talk but we want to be quiet (because no words can adequately explain what’s going on in our minds and hearts), we are so very good at being ‘happy’. But the wrongness of losing a child can never be made right. It can’t be fixed, mended or even cried away. No matter what, Oli is always missing. No matter what, our family is always achingly incomplete. We do not choose to be strong. We have no choice.
George died in his sleep in the early hours of 13 November 2013. In the lead up to his death he did not appear to be unwell to the point that he needed any medical assessment, so was not under any treatment for any condition at the time. I had dropped him off at his grandparents the morning before he died whilst I went to work, and he was a little upset when I left – which was unusual for him but he had a good day with his grandparents, eating all of his food and playing normally, and I picked him up at the end of my working day as usual and brought him home. George was not all that hungry when we came home, and had a small dinner. After that I got him ready for bed. The only thing I noticed was that he had a runny nose and seemed tired and ready for bed so I put him down for the night a little earlier than his normal bedtime. He settled to sleep as normal.
The following morning I woke and got ready for work. George was normally an early riser, so it was unusual for him not to be chatting or singing in his cot. I went in to get him up and found him face down in his cot, cold and quite rigid and it was very clear to me immediately upon walking into the room that he had died. I called for Tom (my husband) and then called 999 who sent an ambulance immediately and the lady on the phone talked through how to do CPR, which I initially attempted but I could feel that George had rigor mortis and knew that he had died some time before so I said that I needed to stop. I do remember the lady saying I needed to carry on but it did not feel right to me to do this when I could see he had gone. This was just before 7am and we later found out that his time of death was likely around 3am. The ambulance arrived shortly after I rang 999 and they attached George to a monitor but pronounced him dead very shortly after arriving. I remember the ambulance crew being kind and caring but I cannot remember details about exactly what was done or said. The police came at some stage shortly after this (although my exact memory of this is not so clear) and somebody called my parents and Tom’s parents who live nearby and they came to the house. The police seemed kind too. We left our keys with the police and Tom and I went with George to the local A&E department in the ambulance and we were interviewed there by the police who went through what the process is in this situation. Again, I do not remember all of the details but I do remember that the police inspector was good with us in such a horrible situation and the hospital staff did all they could. The only thing that wasn’t helpful was that they must have been given the wrong information about George’s age as the nurse tried to put him in a Moses basket when we were there which was too small, as he normally slept in a cot bed, and that felt inappropriate at the time.
In the days after George’s death we were visited by a nurse and doctor from the Child Death Overview Panel who were really helpful. The doctor had mentioned about our local hospice (Demelza) having cold rooms and this is where George ended up going between his postmortem and funeral and it was a really helpful place to be instead of a funeral home during that time. Much of the funeral planning was done there with our really lovely funeral director. It was good to have access to this facility during that time and we were really lucky to have a funeral director that knew and worked closely with Demelza and was happy to meet us there. We could not fault the support given to us by our funeral director.
We had fantastic communication with the Coroner following George’s death and he gave us the necessary information and guided us through the various stages. Following George’s postmortem at Great Ormond Street, the Coroner contacted us to advise that no cause had been identified at that stage, but that samples had been taken for further testing. Three weeks later we were informed that George’s cause of death was brainstem encephalitis. At a face-to-face appointment with the Pathologist early in the new year we were told that the encephalitis was caused by infection but the exact infection had not been identified as they had tested only respiratory illnesses which came back negative. The pathologist suspected it was probably an enterovirus but they had not tested for any of these and could not do so at that point so, frustratingly, we will never know the ultimate cause of George’s death. It was really helpful to have this opportunity to discuss the pathology report in person, much better than just getting a report sent in the post. However, it also brought up many questions that can never be answered, such as
- What caused the brainstem encephalitis?
- Why George and not any of his other peers? Was it a susceptibility we passed on to him?
- Could anything have been done to spot this or prevent it? (George did not show any of the normal signs of encephalitis)
- Did we miss something?
- Are any other children we have at risk of this happening to them?
Not knowing the answer to these questions has affected how we have coped with having our three children that followed. It has been hard to know whether we should do anything in the instance of a mild illness as there has been no way of knowing whether the same thing could happen again. This was especially difficult in the period up to the point at which each of the children reached 18 months of age, the age at which George died. This had resulted in more visits to the GP to check the children during this period but we found that the GPs were helpful when we did so. The GP surgery offered condolences in a letter at the time of George’s death but did not call at all during the initial period which could have been helpful. They were there though as and when we needed to see them.
In terms of support we received after George’s death, we found that it was difficult to find out exactly where we fitted in, as our circumstances did not fit under the remit of any particular service. We found that The Encephalitis Society support survivors of encephalitis, The Lullaby Trust and SUDC at the time felt like they were more aimed at SIDS and SUDC but it isn’t that way now. There was a period where I remember feeling turned away by different services and very alone. For example, Demelza were wonderful for allowing us to use their facilities for George before his funeral but they made it very clear that they would not offer any ongoing support. They initially sent one of their support workers to chat with me and provide bereavement support but she was then withdrawn by the manager there quite abruptly.
I was halfway through my pregnancy with our second child when George died, and I found that the midwives did not really know what to say or do so largely avoided the topic. However, once I was further into the pregnancy, we saw a health visitor who fought to provide us with a CONI service (under the Lullaby Trust) as this was not available at the time in our area and it was also not clear whether we would qualify as George had a cause of death rather than it being unknown. Once this was set up we found this invaluable during the newborn phase of each of our subsequent children. We also accessed counselling via the GP for a short period, but this was not very helpful as it seemed as though we were connected with the wrong counsellor for our needs. The counsellor we talked to got upset as our loss reminded her of her near loss of a grandchild. I also remember that she was also very focussed on the clock so it wasn’t the most positive experience overall. We later sought counselling through a different service and found that much more helpful.
We had fantastic support from a paediatrician at our local hospital, just because he spotted a need to be there for us. Our daughter, Isabelle, who was born just under 5 months after George died, needed a brief period of care in the NICU at birth and was seen for a 6 week follow up because of that. This paediatrician heard our story and kept each of our subsequent children under his care for 18 months after their birth and arranged metabolic testing for Isabelle after consulting with his colleagues at The Evalina to see if there was anything he could offer medically and also to reassure us.
Throughout this experience, what I really felt I needed was to meet someone else in person who had been through or was going through the same thing and would truly understand. I briefly tried the Befriender support offered by the Lullaby Trust and understand how this can help as I am a Befriender myself now which is a role I value. Unfortunately, for me at that time, I found it difficult to speak on the phone about George and really wanted someone to speak with in person. In the end we found a group through Compassionate Friends who gave us that support in the initial stages.
Sienna was my fourth child; she was born 4.5 week early. I don’t have many memories to share as I had so little time with her, but I do remember she loved being breastfed; out of all my children she was the one I did the longest and I enjoyed it. I would say she was a happy baby born with a lot of hair.
Sienna’s short life was not easy. She was born early; I was admitted to hospital, and it was agreed she would go to neonates after birth but this never happened. I was in labour. The midwife did not listen to me as I constantly told her I was in labour; this then resulted in me having to give birth without my husband – he missed out in a life event because staff did not listen. We were discharged 5 days later only to have to come back the next day as Sienna had jaundice and it was missed. I then stayed another 3 days in hospital. It was so hard not to hold her having to leave her under the UV. We were then discharged again.
A few weeks later I noticed she had a terrible cough; it sounded awful. I went to the GP who gave her antibiotics, but had prescribed an extreme dosage for a premature baby. I decided to call the hospital to check this and they said not to give it.
I went to A&E who monitored her for a while and sent me home as they saw she fed a little.
I went back again to the GP who said she was OK in his opinion. He said it was nothing to worry about, and no x-ray was requested even though I mentioned she was coughing and not feeding much.
In the evening she was just so quiet and not feeding and I was getting upset as no one was helping. My husband called an ambulance which took us to hospital as her breathing was irregular.
At the hospital they admitted us but just monitored her; nothing was done all night. In the morning the consultant came and took me seriously and I was told she had pneumonia and she was rushed to a separate room. All day they tried to help her breathe. In the evening was decided she needed to go to Birmingham Children’s Hospital ICU. It was awful as they couldn’t ventilate her; she was so tiny they had to put her in an oscillator.
At BCH they tried to help her breathe and ran tests; in the evening we were told she had whooping cough and would not make it as her body was shutting down. I then held my tiny Sienna in my arms and watched her take her last breath and also took a part of me with her. Her dad got to see her pass but to this day he feels he was robbed of that precious day she was born as he was not there.
I don’t remember much afterwards, as grief takes over, leaving you numb.
My husband mentioned after this happened that BCH were so good – they had photos of her done and casts made of her hand prints, and they did a memory box.
It saddens me I walked in with a child and came out with a box. I never opened that box as I still can’t bring myself to look inside.
BCH kept us informed throughout the whole ordeal and what to do – like the death certificate and counselling, including speaking to my other children. Every year they send us an invitation for a walk in a garden in honour of all children that have passed away.
I had a lot of support from my then health visitor who came to see me, which she didn’t have too.
What I think could improve is staff need to listen to parents and mums-to-be. The worst thing is knowing there is something wrong, but you keep being told it’s not. As a mum of three children I knew when I was in labour and I knew my child was unwell. All premature babies if brought into hospital should be kept overnight for observations. GPs should make immediate referrals if child is premature as a precaution.
Doctors should be open and honest in telling the parents what is happening and the severity of the situation. I feel we were not told how ill she really was.
Lola became unwell with chickenpox, a month before her second birthday. Within days, her chickenpox changed from spots to open flesh, and the smell was unbearable. We knew she desperately needed help. We sought medical attention for two days, to be told each time that she was fine, to give her Calpol – and even worse to give her ibuprofen (which studies have shown can make chickenpox symptoms worse, and cause further skin infections!). It got to day 4, and we’d barely slept knowing we had to get her to hospital.
Within 20 minutes of being in A&E, Lola was having tests and cannulas inserted before being taken up to the children’s ward. We were seen by so many different doctors and skin specialists, who had never seen anything like it before. We even had student doctors come to take a look. It really was just exhausting.
Ethan had been fighting off a cough and a cold, and he seemed ok, however after a couple of days he developed a 38.5 degree temperature. His mum, Kim, booked him in for a check-up with their family doctor, who diagnosed him with a viral infection. However later than afternoon, Ethan was very lethargic and didn’t want to feed. She called their doctor again, who said he was probably ok, but to keep an eye on him. After some Calpol and milk Ethan went to bed at 7pm with a normal temperature, and seemed much more settled.
Kim remembers “We checked on him throughout that night, and by 2am our little baby had a 40.4 degree temperature and a rapidly spreading blanching rash. I don’t think I’ve ever moved so fast in my life, and we rushed him to Warwick Hospital A&E department.
Initially the medical team thought Ethan had a urinary tract infection, but after doing more tests they told us he had sepsis. I honestly can’t describe the emotions we went through when we were told this. My husband’s mum sadly died in 2015 aged just 61 years old after a very sudden battle with sepsis, so we knew how serious it was.
Ethan got a lot worse that day, so much so that the doctors had to fight for hours to get a line into him for his vital fluids, and eventually did a lumbar puncture to see if he had meningitis. He was so floppy and grey, with almost a lilac tinge to his skin, and I will never forget carrying my sleepy baby in my arms around different parts of the hospital for tests to try and find the cause.
After a tough 48 hours, Ethan’s vital signs improved, and he was getting noticeably better. The doctors found the cause of his sepsis – Strep A.
Ethan spent 3 nights in hospital before he was well enough to be discharged. Although he was extremely tired for quite a few days after and had to have a further 10 days of antibiotics he has recovered completely and is now a healthy, happy and very boisterous 2-year-old!
I really want to say how important it is to know the signs of sepsis, and to always ask yourself the question – could it be sepsis. It’s so important to trust your instincts as a parent if you feel something isn’t right. It would have been so easy for us to have thought that Ethan deteriorating was just part of the virus, especially as that was what the doctor had told us was wrong (at the time). I dread to think what would have happened if we’d not acted so fast.
Our son, Marty, was born prematurely on 30 July 2021, at 33 weeks. Marty came home with us after just over 2 weeks, and although he was still a dinky dot he was doing really well.
Marty is our only child, and a week prior to his death I took him to the GP as I was concerned that he was unwell. The GP didn’t show much concern as his vitals were ok, and said he probably just had a viral infection he would fight off. They said that I was a very anxious mother and was over-worrying.
Despite seeming a little more fussy than usual, he seemed to perk up the following week. There were no overly concerning signs – he didn’t present any temperature or miss feeds, and he was gaining weight very well.
On the Sunday, Marty seemed fine and was much his normal self. At around 3.00am that night, Monday 27 September 2021, I tried to breastfeed him but noticed he was fussy and didn’t really feed well. I assumed maybe I’d picked him up a bit too prematurely to feed him and he wasn’t very hungry, so I put him back in his crib and we both went back to sleep.
At 4.00am I woke again. I’m unsure what woke me, but I picked Marty up from his crib as his positioning was off from normal. He was still warm but floppy and unresponsive. I woke my partner, Dennis, and told him to turn on the light as I was unable to wake Marty up. He did, and this is when we saw the small trickle of light pink blood coming from his nose.
Dennis called an ambulance and whilst he was on the phone waiting for someone to answer I immediately started CPR as Marty didn’t seem to be breathing. When the ambulance arrived they carried on working on him and took him to hospital. We followed him shortly after answering some questions the paramedics had about Marty.
When we arrived at the hospital, the doctors told us he was critical but stable. We watched in the room as they tried to save him, but around 2 hours later at 6.00am they told us there was nothing more they could do, and that we needed to say goodbye to Marty.
Marty passed away whilst I held him at 6.13am, aged 8 weeks and 3 days old. Around 6 weeks later the coroner contacted me and closed his case as they had found his cause of death to be sepsis. We were very shocked as sepsis wasn’t something either of us had much awareness of.
I wish we had known about sepsis.
I hope by sharing Marty’s story more parents will become aware that this sometimes happens and to push more when they believe their child is unwell. Sometimes I’m not just a simple viral infection as the GP tells you. More awareness is needed by everyone to save lives.
Benjamin was born on 4 April 2015, at a healthy weight and via normal vaginal delivery and we went home in a few hours after waiting for newborn checks. He failed hearing in one ear, all else was fine, and subsequent checks showed his hearing was fine. Benjamin fed frequently and well and gained weight. No issues at all, which was a relief after struggling with my elder son, Reuben, who was almost 2 when Benjamin was born. Benjamin didn’t sleep well and didn’t like being put down! He also didn’t like being in a cradle hold, you had to hold him upright. I carried him in a sling everywhere and often ended up pushing an empty pram as he hated being in it! He also hated the car! I gave up trying to get him to sleep on his back and ended up giving in and trying him on his front, which meant I started to get 1.5-2hr stints of sleep at night. He never cried when you held him unless he was hungry and was very smiley. He was happy being held by anyone and loved a bath. He was a strong, happy, healthy little baby and he completed our family. We were overjoyed with him.
Benjamin died on 3 May 2015.
The day prior to Benjamin’s death, he seemed his normal self. He was settled, smiley, feeding/sleeping/bowels open and urinating as normal. We DID notice that he had a runny nose (only one nostril) which was new. The fluid was clear. We were at my Mum’s when Benjamin died. She is an experienced mother (4 of us), grandmother (has 12 grandchildren) and was a nanny. She also did not notice anything of concern leading up to his death.
He fed overnight and at 6am as usual. What WAS different, was that he would normally want to stay awake, but that morning he seemed to want to sleep. I can’t comment on his colour as the room had blackout blinds and I only had my phone as light. If he was pyrexial, I didn’t notice as I fed him while he was still in his sleeping bag. I put him back to bed and got up to play with my older son (I felt guilty as I hardly had time to play with him). I poked my head into Benjamin’s room a couple of times and presumed he was still asleep. I went back in properly after a shower 2 hours later (8.30am) as it was unusual for him to sleep that long. He was face down and when I went to pick him up, he was floppy, white and had a small amount of blood coming from one nostril. He was still warm. I’m not sure whether sleeping on his front may have contributed to his death given he had an infection.
The 999 call was frustrating. I was trying to do CPR, but it felt like they were asking every 30secs “what is he doing now?” which made it difficult.
The ambulance arrived very quickly and we were taken to hospital. We stopped on the way to meet a first responder who had the IO needle. It wasn’t the right size and went straight through his bone and fluid filled up his lower leg. This was distressing for me.
The resus team awaited us and it went as I expected. We were taken to a room and allowed family in to sit with us. They provided me with a pump so I could express which was very much appreciated. They allowed me to stay with Benjamin when they took samples and brought a nappy and clothes so I could dress him.
It was upsetting that when I wanted to get clothes for Benjamin to wear, my family at home were not allowed in the room as it was a crime scene.
Communication between North Yorkshire and West Yorkshire police was a nightmare. N. Yorkshire were trying to get W. Yorkshire to find my husband Matt (he was cycling as part of the tour de Yorkshire) and blue light him over. When they did eventually find him hours later, it took ages for him to get on the road. Matt was not permitted to drive himself. Someone drove his car and he came in the police car, but he was not blue lighted, so we had to wait for ages and unfortunately by the time he arrived, Benjamin was cold and stiff which was an awful experience for Matt.
My memory of the police is that they were kind, the interview/statement went ok and they took us back to see Benjamin which was very good of them.
We learnt that Benjamin had ‘Interstitial Pneumonitis secondary to a Strep A infection’. This confuses me though as I thought pneumonitis was the term used for inflammation NOT caused by infection. They also thought he may have had a viral illness, but without re-reading the results, I can’t remember what it was. It came as a real shock, as in my experience, children and babies show signs of being unwell, but this wasn’t the case with Benjamin at all. I found it hard to accept, as there was nothing I could learn or take away to prevent something similar happening in the future. Even now, when my kids are unwell, it makes me extremely anxious. I appreciated being able to meet the paediatrician who talked through the postmortem and test results.
Ruben was 29 days old and a beautiful growing, happy baby. I remember that Friday evening so clearly: he fed as normal but was violently sick. His breathing was slightly laboured and he made a funny little noise when I put him down; he just wasn’t himself and something made us phone for an ambulance. Whilst on the way to the hospital his temperature spiked and his heart rate rose. That was the beginning of all the doctors, nurses, tubes and machines.
Ruben deteriorated very quickly. Within a few hours, he was put on a ventilator and transferred to a PICU at a different hospital for specialist treatment. It wasn’t until the next day we received the diagnosis of late-onset group B Strep meningitis and sepsis.
Over the next four days, Ruben underwent numerous CT and MRI scans, and brain monitoring but things went downhill. His poor little body was overwhelmed with the bacteria. He began to suffer multiple seizures, each one hinting that there was extensive brain damage. We had to make the heart-wrenching decision no parent should ever have to make: to move Ruben to a hospice and take him off his ventilator. He passed away peacefully between me and John, on 4 August 2022, at just 33 days old.
GBS was never mentioned to me during my pregnancy. I just wish I’d have known more about the devastating effects of GBS and that late-onset GBS infection existed.
I knew nothing about group B Strep or the risks it posed. I started shivering in labour and within a couple of hours, my labour had progressed, and I was in excruciating pain. This wasn’t my first labour, and I kept saying something was wrong.
After being in horrendous pain, I was desperate for them to do something, so I was actually relieved when they said they were putting me under general anaesthetic and performing a C-section. I woke a few hours later to my fiancé telling me we’d had a boy and showing me a picture of a baby that looked just like our first but was in an incubator with tubes and wires everywhere. He told me our baby was in NICU and showing signs of an infection. I felt awful but assumed it was due to the C-section.
Only during my ‘debrief’ did I realise how poorly I had been myself. I wasn’t well enough to even get out of bed until around 10/11 hours later when I was finally wheeled to the NICU to meet my baby. For the first few days, I only got to see Vaughan when my partner could come to wheel me down and around my own medical care. He was also looking after our 5-year-old at home who was desperate to meet his new baby brother.
After a couple of days, they told me I had group B Strep infection, and they wanted our consent to do a lumbar puncture to test for meningitis. Thankfully it was negative, but group B Strep did show up in Vaughan’s blood, and he had signs of a chest infection. For ten days, we were in the hospital telling ourselves we weren’t as bad off as others, but I was falling apart emotionally. I was so desperate to get us both home.
I’d read up online about group B Strep and was terrified, as it said even with treatment, babies can die or have lifelong complications. We had issues with his infection levels spiking back upwards and it was hard not to fear the worst, but eventually, they came back down, and we were discharged.
Vaughan has fully recovered, although he has had multiple other issues, such as cow’s milk allergy, anaemia, wheezing episodes, various viruses and reflux etc. We don’t know if these are related to GBS or just a coincidence.
For months after he was born, I was incredibly anxious about everything. This is easing now, but I would say the worry and feeling that I had that I might not be taking our new baby home to meet his big brother didn’t leave me for quite a long time – especially when I heard of others I knew who had lost babies from it.
I feel incredibly lucky that we made the recovery we did and want to do anything I can to help prevent other families from going through the trauma we did and much worse.
Melissa and William
One night, we just couldn’t get Theodore to settle. From about 9pm he kept screaming, wouldn’t feed and couldn’t sleep. We initially thought it was colic but called our midwife helpline. They assumed it was digestion related and tried to give tips on feeding.
My husband and I were taking it in 1.5hr shifts to try and rest. My husband had finally got him to sleep on his chest, but when I’d put him down to change him during my turn at 4.30am, I noticed that one side of his neck and face was swollen.
We tried calling the helpline again but couldn’t get through, so we decided to drive to A&E. When we arrived, the first doctor to see him thought it was an infection, and they started antibiotics.
To this day, I am convinced that that doctor and his quick decision saved my son’s life. We were moved from A&E (luckily, our hospital has a paediatric A&E) and admitted after a couple of hours. They lent me a breast pump and took fantastic care of myself, my husband, and Theodore. He did have to have an NG tube inserted as he hadn’t fed in approximately 15hrs, but after a couple of days, the antibiotics worked their magic, and we got to go home and return in the mornings to have them administered.
I’m eternally grateful to the staff at the hospital for doing all they could to look after my little boy. We’re fortunate it was caught early and that we live so close to the hospital. My husband and I now find that we get very easily stressed about his health and find it incredibly difficult to return to the hospital.”
2. Case studies
Improving access to childhood immunisations among asylum seekers, refugees and recent migrants
Background and summary of intervention
Numbers of asylum seekers and refugees resident in Southwark have increased significantly since 2020, as a result of the growing asylum backlog, the Afghan Resettlement Scheme and the Homes for Ukraine scheme.
A key learning point from a Child Death Overview Panel review of a May 2022 death in an asylum seeker and refugee hotel was that ‘there are discrepancies for refugees accessing care depending, for instance, on whether families are part of the Afghan resettlement process’.
In response to this and other concerns, Southwark has been working on a programme to improve access to healthcare for asylum seekers, refugees and other vulnerable migrants.
Low uptake of childhood immunisations in asylum seekers, refugees and recent migrants is a significant public health risk, as we saw with the outbreak of diphtheria among asylum seekers arriving into Kent last autumn.
As part of this programme of work in September 2022, we have been undertaking a multi-component intervention to improve access to childhood immunisations among asylum seekers, refugees and recent migrants.
The intervention has been funded using a Partnership Southwark (joint ICB/local authority commissioning team) vaccine hesitancy budget set up during the COVID-19 pandemic, and has been relatively low cost.
The intervention includes:
- Work with voluntary and community sector organisations to understand barriers to vaccination uptake among asylum seekers, refugees and recent migrants
- Translating communications materials into community languages
- Outreach vaccination clinics for those living in initial accommodation centres
- Attending engagement events targeted at asylum seekers, refugees and recent migrants to share information about vaccinations
Aims and Objectives
Our programme of work has the following aims:
- Protect asylum seekers, refugees and recent migrants from inequalities in the burden of vaccine preventable disease
- Ensure asylum seekers, refugees and recent migrants are able to access vaccinations at a rate proportionate to their need
- Understand the barriers to immunisation uptake in these populations, and develop long-term systemic solutions to address them.
The programme has the following objectives:
- Increase coverage of childhood immunisations in asylum seeker, refugee and and recent migrant populations.
- Engage with asylum seekers, refugees and recent migrant populations to improve their knowledge of the UK vaccination schedule, and the child health system more generally
- Build trust in vaccinations among communities that have low confidence in vaccination
- Support providers to employ novel approaches to delivering vaccinations to these communities
Since September 2022, we have delivered:
- A project with the Southwark Refugee Communities forum to deliver information sessions to asylum seekers and refugees on vaccination, including through supplementary schools for speakers of Spanish, Somali and Farsi
- An engagement project on vaccination with the Espacio Mama group of Spanish speaking mothers, which has included
- A listening session which gathered feedback on vaccine uptake among the cohort, and barriers they faced to accessing vaccinations.
- A session with a Spanish-speaking GP and a midwife around understanding roles and responsibilities for prenatal and antenatal care, and the right to free primary care regardless of immigration status.
- A session with a Spanish-speaking practise nurse and health visitor on the UK immunisations schedule, and support available from the health visiting service.
- An engagement event around vaccinations and broader child health topics for families taking part in the Homes for Ukraine scheme, tailored around the specific challenge of high levels of vaccine hesitancy in Ukraine.
- Promoting vaccinations and answering questions from parents at events aimed at asylum seekers, refugees and recent migrants, including Refugee Week celebrations and a Community Feast aimed at those living in initial accommodation centres.
- A programme of outreach clinics for the polio booster vaccination, delivered in partnership with the Health Inclusion Team at Guy’s and St Thomas’ NHS Trust.
- Clinics in initial accommodation centres, delivered in partnership with the associated GP practice and the Health Inclusion Team, to offer catch-up immunisations to children living in initial accommodation identified as not up to date with the UK schedule.
Outputs and outcomes
The programme has had a range of outputs so far:
- Over 50 asylum seekers, refugees and migrants engaged in in-depth discussions about childhood immunisations, and the barriers communities face in terms of access
- 1000s of asylum seekers, refugees and recent migrants reached with information about childhood immunisations, shared by trusted community voices and where possible translated into their native languages.
- Significant evidence generated on the barriers facing these populations in accessing immunisation, including the first ever report we are aware of providing a quantitative estimate of childhood immunisation uptake among Latin American migrants in London.
While the programme has not yet been completed, we have seen some initial positive outcomes:
- 90% of those who attended in-depth engagement sessions said the sessions would improve their ability to make informed choices around their child’s health, and felt more confident about accessing health services.
- Uptake among eligible children living in initial accommodation of the polio booster campaign was in-line with uptake in the general population.
- 40 vaccines delivered in first jointly delivered in-reach session for childhood immunisations at a Southwark Initial Accommodation centre
Challenges and learning
The programme has highlighted a number of challenges that remain in ensuring equitable access to vaccinations for asylum seekers, refugees and recent migrants
- Trust in the NHS, relating to concerns about immigration enforcement, charging and being denied GP registration due to a lack of ID
- Challenges booking vaccination appointments, in part driven by barriers to accessing primary care experienced by the general population, but also due to language barriers
- Issues for providers and patients around accessing vaccination records of those vaccinated abroad, and reluctance among patients who have already had some vaccines abroad to start them again on the UK schedule
- Challenges identifying undervaccinated patients in initial accommodation centres due to delays in initial health assessments caused by high numbers of new arrivals over the past year
- Limited data is available on childhood immunisations coverage among asylum seekers, refugees and recent migrants locally, due to a regularly shifting denominator and migration status not being coded by primary care as standard.
Future work in this area will include efforts to address some of these challenges.
Alder Hey Children’s Hospital specialises in the care of children and young people and remains the main children’s hospital for Liverpool, and is a tertiary referral centre for North Wales and the Isle of Man and is one of only two major trauma centres for the North West. Last year Alder Hey treated over 68,000 children and young people in its Emergency Department (ED), which represented a 13% increase since 2019-20 and at its busiest, saw over 300 attendances a day in a department that was only built to cope with 150 attendances a day.
To improve accessibility for primary and community care to the acute paediatric team, streamline patient flow, free up space in ED and ensure patients are seen at the right place at the right time by the most appropriate clinician, a new model of care is being piloted predicated on the creation of a dedicated assessment area for acute paediatric patients (PAU). The unit is overseen by acute paediatricians and advanced nurse practitioners (ANPs), and accepts direct referrals from General Practitioners (GPs), midwives, health visitors and the community nursing team, enabling a significant number of patients to bypass ED, and be seen by the most appropriate clinician as per their needs. The new pathways are being refined over the summer months as part of winter planning and in preparation for the move to a new urgent care centre in 2025.
Funding of £298k was required to set up the pilot for a period of 8 months, covering the costs of an additional ANP, nursing staff and administration staff, as well as a small amount of equipment/estates work. The funds were provisioned from some of the Trust’s 2023/24 winter monies allocation.
Urgent Assessment Model of Care
PAU comprises 10 beds and sits alongside ED’s clinical decision unit (EDU), which has two beds. There is also a waiting room in PAU that can hold up to three families and is able to support patients waiting to be admitted to PAU. The unit is located close to ED, is open 24/7/365 and is staffed with three qualified nurses and one healthcare assistant. There is one ward co-ordinator available to support PAU whose role is to accept all GP and community referrals; or to signpost the referrer onto the paediatricians or ANPs for advice.
There is a dedicated telephone number for GPs and community nurses, which enables referrers to communicate and agree a decision on the most appropriate assessment pathway for a patient, leading to:
- No waiting on switchboard or a call back;
- No waiting for a decision – the referrer can communicate the outcome to families immediately.
There is consultant presence on PAU Monday-Friday, 11am – 7pm, and ANP presence Monday-Sunday, 8am-9.30pm. The junior doctor team are also present in PAU during the day and directly manage all overnight referrals/admissions.
Stable patients requiring urgent medical assessment within the Trust’s catchment area can be referred directly to PAU. The only exclusions are patients requiring resuscitation, patients requiring mental health input, patients with a tracheostomy and non-invasively ventilated patients.
PAU is intended for children and young people who may require same day urgent assessment and intervention. For all other needs, GPs can access the paediatric rapid access clinic or seek advice and guidance from the consultant team, either by contacting the GP hotline (manned by a consultant paediatrician Monday-Friday 11am-1pm) or via Choose & Book/e-RS.
From GP referral to hospital discharge – some infection-related examples
The following examples demonstrate how the PAU model of care works and are based on three actual scenarios:
- A child presented to a local GP with daily fever for 6-7 days and a little coryzal. Mum’s main issue was an average dry cough. The GP referred them to PAU and they were seen on the unit the same day without needing to attend ED. The child was seen by the PAU ANP and doctor and assessment and diagnostics were undertaken. Following this and based on the test results she was diagnosed with pertussis, covid and rhino/entero virus. As several sources of infection had been identified/diagnosed and the patient was otherwise systemically well she was discharged after approx. 4-5 hours with red flag safety advice and oral antibiotics for pertussis. She was already up to date with immunisations. A notifiable diseases form was completed and submitted to Public Health.
- A child presented to a local GP with swelling to the right eye that came on suddenly overnight. They had a history of a recent upper respiratory tract infection (URTI). The GP referred them to PAU and they were seen on the unit the same day without needing to attend ED. The child was seen by the PAU ANP and doctor and diagnosed with peri-orbital cellulitis. The patient was cannulated on PAU and the IV antibiotics commenced before being transferred to the general paediatric ward. The child was seen by the consultant on the ward round the following morning. They were discharged 48 hours later on oral antibiotics.
- A child presented to a local GP with swelling to the right eye that came on suddenly overnight. They had a history of a recent URTI. The GP referred them to PAU and they were seen on the unit the same day by the PAU ANP and doctor without needing to attend ED. The child was diagnosed with peri-orbital cellulitis and was discharged on oral Co-amoxiclav (high strength) with red flags safety netting advice.
- A 14 day old baby was referred in to PAU directly from the midwife with reduced feeds and not waking for feeds. She arrived on the unit and was seen by the PAU ANP and doctor. She was assessed and monitored and it was determined that she needed to be screened for sepsis. She was cannulated, given IV antibiotics, IV fluids and closely monitored. She was admitted to the ward for a minimum of 36 hours until all results returned. During her admission she improved and her feeding improved. She was discharged home when treatment completed with red flag advice and midwife support.
Reflecting on our learning
The pilot has been running since 8th August 2023. Some of the key changes made as a result of feedback received to date relate mainly to the pathways to PAU via ED. Referral pathways to PAU for GPs have been largely working well with good anecdotal feedback from both GPs and patients.
There is a continual learning process in place and further refinements and improvements to the model will be required especially heading towards winter as PAU starts to get very busy.