HELP! Callum Murphy needs you!

We as a family do not know what else to do but put out this open letter to ask for help from anyone who can help before we lose our son to this situation. We are begging everyone to share this far and wide so the powers that be cannot hide for what is happening to our son.

To Whom it Many Concern.

We are begging to see if you can intervene in our son’s case. Here is Callum’s story but to first give you a little background information we are in the UK Callum has been disabled all his life with brain damage from a premature birth, cerebral palsy, global development delay, hydrocephalus and Autism. Despite his disabilities he was always a joy to be around a amazing human being, funny, cheeky and exceeded all expectations for what we were told his prognosis would be when he was young.

For everyone who knows Callum, I don't have to explain how special he is, how strong he is and to know him is to love him he is just one of those special people.

Unfortunately, on the 23rd May 2023, Callum had a prolonged seizure after his VP shunt blocked he was taken to our local hospital Barnsley who after a couple of hours of trying to control the seizures eventually sedated & ventilated him to get a CT scan. The scan showed his shunt was blocked and he had high levels of CSF and his head was under pressure due to this he was transferred to Sheffield Hallamshire hospital in Sheffield South Yorkshire where he was operated on and a EVD (external ventricular drain) drain put in.

As Callum’s shunt had been in for 24 years since he was 3 months old the surgeons said they were only able to remove the top 1/4 of the shunt as it snapped when they attempted to remove it. The shunt and CFS sample were sent from testing and were told if there was an infection showing in them that they go back in and remove the rest of the remaining shunt. Callum is both disabled and autistic and has a extreme mouth phobia that much so he normally has to be put under general anaesthetic to have his teeth cleaned he also has a extreme phobia to hospitals doctors nurses etc. and under normal circumstances would struggle with being anywhere near them.

After the initial surgery attempts were made to remove the sedation and wake Callum up we as his parents advised that this would not work due to the ED tube and his extreme phobia over approximately 5 days they tried this method which resulted in extreme blood pressure, heart rate and Callum biting down on the tube. Eventually it was decided that a tracheostomy would be put in despite us asking for this at an earlier stage once the tracheostomy went in sedation was successful removed within 48hrs.

Callum received an MRI scan at 8/9 days post-surgery which show damage to his occipital region as well a mid-brain. At approximately the same time as this the cultures on the shunt removed from Callum tested positive for a Propionibacterium infection.

After the scan the doctors several times pressured us for DNR orders and implied that they would like to withdraw care. Callum was still on a ventilator and extremely poorly at this time Callum had extreme temperatures, Tachycardia, bradycardia, poor respiratory which the doctors said was due to central brain damage.

We, however, believed he was poorly due to the infected shunt in him. The doctors refused to remove his remaining shunt despite it testing positive for infection saying if they removed it, they would have to cut him from neck to groin to get it out and it would kill him. We did not believe the shunt couldn’t be safely removed and we begged for a second opinion from gastric or general surgery especially as the only symptom Callum had prior to his shunt blocking was constipation.

Over the next couple of days, no attempts were made to control Callum’s temperature as the nursing staff were told the symptoms were centrally driven and antibiotics were stopped. we were called into a meeting with a consultant neurosurgeon and a consultant anaesthetist who spent the meeting telling us that we were bad parents we were not putting Callum's wellbeing first that we should be looking at withdrawing care and placing him on a DNR and that if it was their children this is what they would be doing. They said Callum would never wake up, breath without a ventilator, control his heart rate or temperature.

By this point we had spent 2 weeks at our boy’s bedside watching him fight and cling to life we were heartbroken, confused and being belittled in that manner was a added stress we did not need. I’m not sure where we got the strength in that meeting to fight back for Callum but fight we did we believed it wasn’t just the injury to Callum’s brain causing the problems we believed he had an infection coming from the remaining part of the shunt they had left inside him and refused to remove. The doctors categorically refused to believe this was the problem despite our concerns. Despite all our experience as his parents of knowing what Callum looks like when he's poorly.

The meeting got to the point where the doctors were being extremely aggressive and saying they would ultimately have the final decision on what would happen in Callum’s care. At this point after trying in vain to reason with the doctors we said we would discuss withdrawing care if the doctors ran Callum’s bloodwork to prove he did not have an infection the doctors grudgingly agreed to this just to shut us up in fact when we asked them to do this the doctors exact reaction was to stand up slap both hand on the table leaning across and saying fine I will prove it then.

Callum’s bloodwork investigations showed his infection marker were extremely high and he had a severely elevated pct level due to this they rushed Callum down for an emergency Chest, abdomen and pelvis CT scan to check for sepsis. He was put on 4 different antibiotics and eventually his bloods and pct levels normalised. Once his infection markers started coming down his temperature normalised and respiratory improved dramatically.

Throughout this period Callum’s conscious level remained extremely low however after 6 weeks of antibiotics and being on an EVD it was decided that he could have a new shunt put in. At this point we had repeatedly asked for the surgeons to remove the rest of Callum’s old shunt we had repeatedly asked for a consultation with a gastric or general surgeon this was refused repeatedly. We expressed concerns about Callum’s continued high infection markers in his blood and that we were concerned the infection would spread back to his brain if a new shunt was put in whilst the old one still remained in his abdomen to contaminate the new shunt these concerns were ignored by the neurosurgery team.

We were to learn much later that the Sheffield neurosurgery team did not want to put a shunt back into Callum and that the surgeons approached Leeds neurosurgery team in an attempt to have them support their decision to withdraw Callum’s care this was all done behind our backs luckily Leeds did not agree with Sheffield, and we did not learn about this until about a month later.

Straight after surgery to put in his shunt Callum was more alert than he had ever been his eyes were open and more alert. Unfortunately, by the following morning he started having problem and a CT showed the shunt wasn't positioned properly so he went back down to theatre again the day after the initial surgery for the shunt repositioning. Again straight after this surgery he was more alert then seemed to go less conscious within about 24hrs this led me to question his new surgeon about the CSF levels and if his shut was draining enough due to this conversation the surgeon agreed to turn his shunt down to 2 from 5 and this definitely improved his conscious level in our opinion we since found out the EDV was set at 5 and earlier at 10.

Callum had not woken up properly for the first 6 weeks and it was at this point after surgery that the niggling concerns about Callum CSF levels started. We started to worry that him not waking was not just due to the damage to his brain or the infection. The day after the reposition surgery we were told a PCR test had identified Propionibacterium in Callum’s CFS sample that was took in surgery we were certain that this was from the old shunt we spent the next 12 days trying to get a consultant neurosurgeon to come and speak to us nobody would despite us being in the hospital for a average of 9/10 hour a day.

During this time a series of very junior doctors were sent in to see us who couldn’t answer any of our concerns. Our concerns were taken back to the consultants, but we received no answers. During this time, we asked to see Callum’s CT scans and one of the junior doctors got one up on the computer in front of us. For people who don't know Natalie has a degree in radiography when she saw the scan she went ballistic Callum’s scan clearly showed enlarged ventricles whilst Callum was in Sheffield care this should never have happened, and we believe this is one of the reasons Callum was not waking up properly.

After 13 days we saw a consultant neurosurgeon and for the next week we were messed about we found out there were multiple CT scans showing enlarged ventricles whilst Callum was in Sheffield’s care. The doctors denied this was the case saying Natalie didn't know what she was looking at and that it was normal. Callum again was really poorly had been on high dose IV antibiotics since his shunt surgery we were extremely worried his new shut had become infected from his old one this was categorically denied by the doctors. He had repeated incidents of blood in his urine too.

From finding out Callum’s CFS tested positive for the same bacteria he had in his original shunt we repeatedly asked for both shunts to be removed, we asked over and over again for a second opinion from another neurosurgery hospital. The neurosurgeons insisted his shunt was not infected whilst they tested everything and everywhere for another source of infection even calling in an infectious disease specialist to try and find and infection anywhere else everything came back clear. This was all done whilst Callum was receiving high dose IV antibiotics for an infection nobody could find except for them refusing to look at the obvious source the old shunt inside Callum. Eventually after getting nowhere with the doctors, we officially requested the Callum be transferred hospitals.

Once we asked for Callum to be transferred an MDT meeting was arranged at this meeting, we were told the hospital would ask other hospitals for a transfer. That they wanted to finish the 28-day course of antibiotics before resorting to surgery that we needed to put aside the concerns we had and concentrate on Callum and his care and that they could be investigated later the doctors promised to be more open and honest and we left the meeting hoping for the best.

Unfortunately, unbeknownst to us throughout the meeting for 1hr 45 minutes Callum had been having serious seizures the doctors in the meeting knew this but chose not to tell us the first we knew was when Natalie waked into the room to see Callum seizing and to be told by her nephew that it had been happening for an hour and 45 minutes and they had told him they had told us.

The seizures were that bad that Callum had to be put under sedation to control them and to protect his brain the irony of this being that the only doctor on the ward able to do this was sat in the same meeting also completely unaware of what was going on.

After this happened, we now insisted they move Callum hospitals. Another MRI was run on Callum, this showed further damage from the earlier one the neurology department was called in to do EEGs these again showed further damage to Callum’s brain compared to his earlier EEGs this damage has all happened whilst he was in Sheffield’s care.

The Neurology team insisted the EEGs showed the seizures were originating from the site of Callum’s shunt the Neurosurgeons denied the shunt was the problem. We insisted that Callum be transferred immediately to another hospital and asked to speak to the medical director of the trust.

The following day the neurosurgery department did an about turn and decided the new shunt and old shunt was the problem and that both need to be removed. By this point the neurosurgery team had made that many mistakes and our trust with the hospital was that low that although we agreed that both shunts needed to come out, we wanted Callum moved and this done elsewhere. We raised concerns about the hospital never using an intercranial pressure monitor on Callum despite him meeting all the criteria we were told the hospital didn't have any something we later found out to be a lie.

The hospital agreed to ask other hospital to take Callum but were still pressuring us to agree to surgery with Callum we held out as we felt the hospital just wanted to obtain the shunts inside Callum so they could control the testing ran on them. Sheffield said no other hospitals would accept Callum for transfer and insisted that the surgery need to be done as we were left with no option and would never jeopardise Callum’s life we reluctantly agreed to the surgery. We were told Callum could be moved after surgery to another neurosurgery hospital this was later denied and refused.

A consultant general surgeon was called to assess Callum prior to the surgery he categorically denied ever saying the shunt removal surgery would kill Callum and be a high risk to his life like the neurosurgery team told us they had said.

Callum went down for surgery and both shunts were removed in under 2hrs with very little incisions. After surgery Callum developed an acute kidney injury and became extremely poorly, we asked for a renal consultation the neurosurgery team said they were in contact via phone but didn't see the need for Callum to see anyone in person despite his creatinine level increasing to 5 and a half times his pre-surgery level and his 24hr clearance being only 14. The renal consultant apparently asked the neurosurgery team to arrange a ultrasound of Callum’s kidneys they chose to ignore this and ran a CT instead.

They pumped Callum full of fluids and insisted he was ok as he was passing urine despite the fact he had extreme oedema. When we pointed out the oedema the staff said they could not see it, so we asked for him to be weighed to prove it. Once we asked for this the fluid was stopped within the hour and the scales were unavailable until 5pm the following day when most of the oedema had dissipated.

The day after surgery they began ventilator weaning Callum despite his poor kidney function, the infection and him having just had surgery. Within 9 days they were already talking about putting a new shunt in before the standard 14 days of antibiotics had finished and all whilst his kidney function had still not returned to normal.

We had a meeting on day 12 after the removal of the shunts with Jennifer Hill one of Sheffield’s clinical directors, one of the Neurosurgeons and the ICB nursing director, on legal advice we asked to record the meeting and have a copy of this permission was granted to record it.

In this meeting the neurosurgeon admitted that they believed both shunts were infected even if it did not show on cultures as this would probably be a false negative due to the amount of antibiotics given to Callum. They also admitted the original shunt replacement was done wrong causing the need for the reposition as they didn't have the right equipment in theatre this equipment being the brain lab equipment. The clinical director uses the NHS favourite phrase of lesson need to be learnt in Callum’s case this is all recorded.

In the meeting they said they wanted to put Callum’s shunt back in the following day on day 13 before he had finished antibiotics before they had tested after antibiotics had stopped that everything was OK. We were not OK with this we said we would like them to wait until the antibiotics were finished as we were concerned the infection was still in Callum’s abdomen and would reinfect his shunt, we wanted them to have at least a clear 24hrs off antibiotics to test his bloodwork. This would also give more time for his kidneys to stabilise as they still weren't back to normal levels. So essentially, we asked them to wait 48hrs longer than they wanted to. We were also concerned about what they would set Callum’s shunt pressure at as they had never got it right and they said they could put a shunt in with a built-in pressure monitor we agreed to this. Reluctantly they agreed they would wait they did say they would not transfer Callum to another neurosurgery hospital and that he would be transferred back to a general hospital Barnsley once his shunt went back in.

The following morning by the time we had got to the hospital they were already preparing Callum for surgery going against everything we had agreed on the day before. We refused to sign the paperwork to agree to surgery however they said they could do it without our permission as the doctors agreed on it. They took Callum for surgery and put his shunt back in the pressure monitor shunt we agreed on wasn't used they agreed amongst themselves to change it without our knowledge.

The day after surgery Callum was poorly the neurosurgeon came to see him and sent him for a emergency CT scan at 5pm we have no idea to this day what that scan said as we have never been allowed to see it we were told it was ok at 10pm by the nursing staff as the Neurosurgeons were unavailable.

We did not see another neurosurgeon from that point onwards until 9 days later 15 minutes before Callum was transferred to Barnsley hospital. We were glad when Callum was transferred to Barnsley, we were hoping they would help us obtain a second opinion to help check Callum was ok however this wasn't to be the case.

We hit constant brick walls trying to get a second opinion apart from one doctor who managed to get Callum’s scans looked at by a neurosurgeon at Nottingham who agreed that Callum had multiple episodes of dilated ventricles throughout June and July 2023 whilst in Sheffield’s care something Sheffield still denies.

Callum has episodes showing neurological symptoms such as sunset eyes sleepiness, nystagmus, he also has raised temperature, Tachycardia and bradycardia Sheffield has explained these symptoms as a result of the damage to his brain. However, these symptoms are always accompanied with raised bloodwork and all go away with antibiotics Callum left Sheffield on antibiotics for a suspected chest infection he spent 4 month at Barnsley with his blood infection markers going up every time antibiotics stopped this has continued since he has been at home too, the episodes starting within 7/10 days of the antibiotics stopping.

We have always believed this is due to Callum still having the same Propionibacterium shunt infection that he's had since the beginning and the antibiotics reducing the infection which reduces the symptoms temporarily.

We reluctantly got Sheffield to take Callum for the day to do a CFS sample whilst he was at Barnsley we begged them to check the sample for the Propionibacterium infection to do a PCR test on it and an extended 14-day culture they took the sample but did not run these tests. They did not test for the only bacterial infection that Callum has ever had in his shunt we have also recently found out that the 2 shunts they took out of him did not have these test ran on them either.

We have asked Callum’s GP to refer Callum’s care to Nottingham and have been told only Sheffield can refer him. We have spoken to Nottingham in January and Sheffield had not referred Callum and according with who we spoke to today they have no record of Sheffield ever asking them to take over Callum’s care this includes back in July 2023 when we asked Sheffield to transfer care to another neuro hospital and they said they had asked Nottingham. We have found out in March of this year that Nottingham were asked to have Sheffield back in July and did accept him but then heard nothing further from Sheffield so they assumed the issues were resolved.

Nottingham refused to take over Callum's care as they say they are too far away to manage him day to day and have suggested Leeds take over. Leeds is also refusing.

Callum ended up back in Barnsley hospital in February 2024 for 3 weeks a repeat of the same symptoms again Sheffield refused to take over care.

When he went home the antibiotics routine started again. Callum is currently back in Barnsley Hospital again since the 26th May 2024 and still being refused neuro treatment despite this time having been admitted with seizures too.

Sheffield are refusing to take ours or Barnsley hospitals concerns about Callum’s shunt seriously and are refusing to run the appropriate tests. They are yet to transfer Callum’s care to another hospital and are actively blocking us getting as second opinion as they are refusing us access to his medical records.

They will not answer questions, they will not look at Callum in person and it is clear they have made a continuous pattern of mistakes, yet this hospital is still in charge of our son’s care. We have gone everywhere we can think of for help - to PALS, the CQC, the ICB, our local Labour MPs multiple times, the mayor of South Yorkshire, and central government nobody is willing to help nobody is listening - this is surely not right. We have emailed the Secretary of Health, the Prime Minister, the opposition party leaders, newspapers, news broadcasters, pretty much anyone & everyone we can think of.

We fully believe our boy has been treated in this way because of his disabilities because his life was deemed as not important. We are in hell as parents unable to help our precious boy to get a second opinion to get answers. If what we suspected is right eventually this will kill our boy and we are expected to just sit and watch it happen.

Barnsley hospital ICU are refusing Callum ICU care we strongly believe this is because of his disabilities. He contacted a pneumonia about 10 days ago and nearly died whilst being refused ICU care. The bacteria for pneumonia was never identified and we strongly suspect that it could be the same bacteria we suspect is in his shunt.

He has an abnormal bowel that Barnsley are refusing to investigate due to they say his brain injury a brain injury that potentially was caused by the medical negligence at Sheffield. We are absolutely heartbroken and desperate we feel our boy is just going to rot in a general hospital until he deteriorates and dies while nobody is listening.

We are literally begging for help this situation cannot be right. Please, if there is anything anybody out there can do to help we would appreciate it if you can't help please share so hopefully we can get Callum’s case to someone who can help.

Many Thanks,

Callum’s Mum, Dad & Family