Charlie was the youngest of 6 children. He was born 2 weeks early and weighed a decent 8lbs 15oz.
Charlie had a bit of a pot belly as a baby and would spit up his milk. He was fed on formula and his mother changed to different types as he didn’t seem to tolerate any. As he grew, Charlie would choke a lot on even the softest of foods.
Charlie had continence issues. By age-six he had stopped messing himself but still would wet himself. This continued even to the morning when he became seriously ill.
Tuesday 18th December 2018 was the last day of term before the Christmas holidays, Charlie woke up and vomited bile. His parents thought it was ‘just one of those things’ and that he would be fine but kept him home from school.
By lunchtime, Charlie’s mother thought they should get a sneaky Dominos pizza to share but Charlie never ate any of his. She thought “great! It is a stomach bug and everyone will have it over Christmas!”
It was not the stomach bug. Nor did Charlie recover fully as his tummy became more and more distended and his appetite started to decline. If Charlie ate more of something he liked, would immediately vomit.
In the February 2019, at half term holiday Charlie and his family had gone out to the beach with friends and stopped off for lunch. It was another of Charlie’s favorite places and on their way home Charlie projectile vomited, this prompted his family to schedule an appointment with Charlie’s doctor.
The Doctor wasn’t Charlie’s usual doctor. He ordered bloodwork to rule out any feeding intolerances. The results came back negative. The doctor recommended that Charlie be seen at his local hospital.
Charlie was seen by a general pediatrician who then referred him to a gastroenterologist. An appointment was set but Charlie’s health declined. Charlie’s school had mentioned that they kept finding Charlie’s lunches hidden.
Charlie’s family pushed for an earlier appointment and an abdominal X-ray was taken. The week after Charlie’s X-ray, the family received notification that mentioned Charlie had large bowel dilatation. Charlie’s mother googled ‘ large bowel obstruction’ and thought that something would be need to be done to address it but nothing was ever done.
Two days later, Charlie was picked up from school (the last day of the school year before the summer holidays). The school mentioned that Charlie was very quiet and hot.
The next day he was taken to his doctor to mention pain behind his belly button and that he had a temperature. The doctor wrote off Charlie’s temperature as just heat stroke and suggested to keep him cool.
A few days later Charlie was still presenting the same symptoms, so his mother phoned his medical team out of hours as it was a Sunday. The team suggested that Charlie see a doctor. Charlie was taken to see the doctor and was thoroughly examined. The doctor ‘could not put his finger on anything‘ so Charlie was sent him home without answers.
The next day, Charlie’s mother still felt that something wasn’t right and his temperature had risen, so she took him to the doctor again. Charlie was sent home with no answers yet another time.
The day after Charlie’s temperature was high and so his mother took him to the emergency center. Charlie laid for hours sleeping on two chairs before being seen. He was then sent through to the children’s acute unit, CAU. Charlie was seen by loads of doctors, none of whom could provide answers. Charlie was sent home at midnight. In the days after, Charlie’s temperature was not coming down and over the counter medicines were not controlling his fever, Charlie’s family headed back to the CAU.
Finally Charlie was admitted to the children’s ward which finally gave his family hope that he was going to get the help that he needed. He had a heart scan (ECHO) and another abdominal X-ray which still showed a large bowel obstruction. Charlie had not had a bowel movement in over a week but the doctors dismissed that fact. They reported that he hadn’t eaten enough and he didn’t have a bowel movement ‘because nothing was in his system.’ Charlie was booked for an MRI scan under sedation but that never happened.
Charlie passed a huge amount of stool and his fever broke the next day. The doctor’s discharged Charlie as a medical mystery.
A few weeks later doctors ordered a barium study. They stopped the study at his stomach noting “Gut normal”.
Thursday 5th September 2019…
One evening Charlie’s mother was cooking dinner. Charlie always played his football (soccer) games on the xbox when waiting for dinner. He had played only one game before he stopped to tell his mother that his belly hurt. His mother had a doctor’s appointment scheduled so she encouraged Charlie to rest.
During dinner Charlie suddenly let out a blood curdling scream and shouted for help “mummy take it away!” His family looked at each other and Charlie’s dad s ‘suggested that maybe it is a bit of trapped wind.’ Charlie stopped. Just as his family finished eating, Charlie again shouted “Oh No Not Again! Make it stop! Make it stop! Mummy take it away!”.
His mother immediately knew that something wasn’t right. Charlie began to vomit, it was brown. His mother immediately phoned for an ambulance. After explaining a brief history and explaining that Charlie was in agony and pale, the operator rudely said “to take him to his GP or out of hours clinic , I have emergency calls to make”.
Charlie’s mother knew that something was seriously wrong as she had never heard such awful screams. She phoned 111 who told her to get Charlie to A&E (emergency room) within the hour, she did.
Charlie had to be wheeled through the hospital as he just could not walk.
He was seen by a Healthcare Assistant (HCA) and his BP was extremely low as was his temperature and he had ketones in his blood. A medical registrar came to see him who did Charlie’s blood gases. When the results were in he came back and said ‘Charlie is a very sick boy!” She had informed the surgical registrar who, back in the August, had seen Charlie a couple of times. He said the boy is known to the hospital and never came to check on Charlie.
At 11pm, Charlie had a chest X-ray to check for free air as the abdominal X-ray was refused. There was no free air, they also attempted an NG tube but kept getting blocked and made it Charlie very uncomfortable. He also became very dehydrated and wanted water so they gave his mother a pink sponge to dunk into water and wet Charlie’s lips. Charlie kept sucking frantically every time the sponge approached his lips.
The surgical registrar finally came in. He poked Charlie’s belly and said it was much better than before.
By 1am Charlie’s bloods became more abnormal. The surgeon was paged. He never replied.
The surgical registrar came back and pulled Charlie’s top up and looked shocked, he reported that Charlie’s belly was a lot worse than his previous exam.
A medical consultant came and shared that they would be taking Charlie to surgery as soon as possible to find what was going on. There was no sense of urgency.
3am onwards on Friday 6th September 2019…
Whilst standing with Charlie as he kept writhing in agony, the surgical registrar and medical registrar came in with two nurses. The nurses had two massive cannulas and went towards Charlie’s ankles. Charlie who feared needles didn’t flinch whilst being stuck. Charlie’s eyes became hugely dilated. In haste the nurses placed an oxygen mask on Charlie and slammed the arrest alarm. The room immediately filled with people. Charlie’s mother was then ushered out of the room and looked back and shouted “keeping fighting Charlie” thinking he had passed out and they were going to rush him to surgery.
His mother didn’t realize that Charlie had passed away and they were resuscitating him in the next room.
The medical consultant came in and said Charlie’s life is in danger and that he may not make it but they still intended to operate to try and save him. Charlie was in his second cardiac arrest and CPR wasn’t working so they used a defibrillator to revive him. After 28 minutes of active CPR he came back.
They took Charlie to surgery and found that Charlie’s bowels had twisted 360 degree’s anti-clockwise and burst. All of his large intestine had died and 15cm of his small intestine. He also had sepsis and bloody ascites in his stomach. They cleared the bowels and proceeded with the Ladds procedure and appendectomy but did not resect the bowel just placed it still damaged back in as Charlie was peri-arrest and it was too dangerous to continue.
Charlie was intended to be transferred to another hospital but when they were transferring him he had another arrest, his 5th.
Charlie had a 6th cardiac arrest.
A nurse started CPR while his mother looked on. An amber and red flashing light started blinking and the nurse immediately started CPR. They didn’t ask Charlie’s family to leave.
His mother stood looking at her darling boy knowing it was futile and Charlie’s dad sobbed in tears.
18.22pm, I told the nurse to stop. Charlie fought a hard battle as a true warrior but he was let down by his medical center and many teams of doctors. He loved and remembered by many.
Charlie’s family has been championing for intestinal malrotation awareness and education for many years in honor of Charlie. Charlie’s Awareness for Malrotation is a fixture in the UK. In pursuit of advancing evidence-based information and awareness for intestinal malrotation and volvulus, Charlie’s Awareness for Malrotation will serve as the leader in Europe for the intestinal malrotation community. IMF supports CAIM’s mission.