Sepsis is a life-threatening condition that can cause organ failure and death. In the UK, there are around 245,000 cases of sepsis every year.
Prompt identification and timely treatment of sepsis is vital to avoid catastrophic outcomes. When sepsis is not recognised, or medical care is delayed, the outcomes for patients can be devastating. Some patients may have to have limbs amputated, whilst others might suffer severe organ damage. And, in the UK alone, nearly 50,000 people lose their lives to sepsis-related complications every year.
Tragically, this is what happened to one-year-old Yousef, who died of sepsis on 5 February 2023.
Baby Yousef was the son of Mohammed Elsiddig and Duaa Siyed Ahmed, both of whom are qualified medics. But despite being doctors themselves, numerous medical professionals failed to listen to Mohammed and Duaa’s repeated and increasingly urgent concerns. Tragically, by the time treatment was started, it was far too late.
What causes sepsis?
Sepsis (also known as septicaemia or blood poisoning) is a life-threatening medical condition that occurs when a person’s immune system overreacts to an infection and begins to attack the body’s tissue and organs. People with weakened immune systems are at higher risk of such infections, and therefore at higher risk of developing sepsis.
It can be triggered by any kind of infection, including colds and flus, infected cuts and chest infections. Sepsis can lead to tissue damage, shock, multiple organ failure, blood clots and – particularly if it is not recognised and treated quickly – death.
Sepsis symptoms
Sepsis presents differently in adults and children, which is why awareness of the symptoms is so vital.
Sepsis symptoms in adults
According to the UK Sepsis Trust, adults who present with sepsis might have some or all the following symptoms:
- Confusion or slurred speech
- Extreme shivering or muscle pain
- Not passing urine
- Severe shortness of breath
- Feeling extremely ill
- Mottled or discoloured skin.
Signs of sepsis in children
Babies and children with sepsis might present with some or all of the following symptoms:
- Fast breathing
- Fits or convulsions
- Mottled, blue or pale skin
- A rash that doesn’t disappear with pressure
- Lethargy
- Abnormally low temperature
- Vomiting
- Not passing urine.
Yousef’s story – multiple failures to diagnose and treat sepsis
Yousef’s death was a tragedy and could have been avoided with earlier diagnosis and treatment. Throughout his illness, he presented with many, if not all, of the sepsis red flags described above – but the signs were missed time and time again.
Yousef’s illness began with fever and flu symptoms shortly after having his one-year vaccinations. His parents understandably thought that this was a passing viral illness and treated him symptomatically with Ibuprofen and Calpol. When he continued to feel poorly, they took him to his GP, who agreed it was probably viral.
Yousef’s first attendance at A&E
A few days later, Mohammed and Duaa took Yousef to A&E. By this time, his fever had lasted for nearly a week, he was not taking much food or fluid, and he had a cough and was not his usual self. Yousef had also become lethargic, sleeping through the whole night – something that was unusual for him.
Mohammed and Duaa were extremely concerned that Yousef may have sepsis and begged the doctor to do blood tests. The doctor refused, said it was likely resolving flu and sent Yousef away with oral antibiotics.
Yousef’s second attendance at A&E
The next day, Yousef’s fever took a turn for the worse and he was shivering and vomiting. He couldn’t keep his antibiotics down. He had difficulty breathing. His parents called 999 and were told to wait for a callback. They were so worried about Yousef that they instead decided to take him back to A&E.
After being triaged as non-urgent, waiting for five hours and being told they were facing an 18-hour wait for treatment, Mohammed and Duaa decided to take their baby home as his antibiotics were due.
After a short spell of improvement, Yousef’s condition deteriorated. He developed diarrhoea and his urine output significantly decreased. His temperature reached an all-time high. He didn’t want to eat or drink. His breathing became fast and flat. His heart rate was rapid and his skin was mottled.
Emergency 999 call
· Mohammed called 999 and described Yousef’s symptoms. After listening to his breathing, the ambulance clinician said that she was extremely concerned that Yousef may have sepsis – however, there were no ambulances available for 10 hours. His parents were advised to take Yousef to A&E themselves within the hour.
Yousef’s third attendance at A&E
Despite the phone operator giving them a referral that was supposed to get Yousef seen more quickly, on arrival, Yousef was treated as non-urgent. Terrified that Yousef had sepsis, Mohammed challenged the triage nurse (who had witnessed Yousef vomiting) but he was told, “Just because you think he has sepsis doesn’t mean he has it.”
Yousef was seen by a doctor, but Mohammed and Duaa were told he likely just had a normal fever. The doctor would not listen to them and Mohammed remembers him cutting Duaa off mid-sentence several times. The doctor refused to do blood tests but agreed to observe Yousef overnight. After judging the overnight results as normal, he stopped Yousef’s antibiotics.
Following more pressure from Mohammed and Duaa, he agreed to perform a blood gas test – which does not check for infection – the results of which were said to have come back normal.
The doctor said to Mohammed: “I’m now happy, it’s your turn to be happy.” Mohammed states that he retorted: “How could I be happy when I’m seeing my child poorly in front of your eyes and you’re not doing anything for him?” Mohammed was told he was worrying too much and, when challenged further, the doctor told Mohammed that he was over-worried. The family were, again, sent home, feeling unapologetically dismissed.
Private bloods
By now, Mohammed and Duua were so desperate, that they decided to try to arrange for private blood tests. As a same-day appointment was unavailable, they booked one for the next day.
The private GP was seriously concerned about Yousef’s condition and strongly advised that Yousef be seen by either the NHS GP or a paediatrician. The blood results took several days to process. When they did come back, they clearly showed high levels of infection in Yousef’s blood.
NHS GP Visit
Whilst at the private GP, Yousef’s NHS GP called to follow up on his recent hospital visit. Mohammed told the GP that Yousef’s condition was deteriorating. His temperature was high, his nappies dry, his stools loose, he was refusing to eat and he was interacting less. He was lethargic and irritable.
The GP agreed to see Yousef face to face in the clinic but diagnosed him with hand, foot and mouth disease – despite a rapidly developing skin rash and no symptoms in these areas of his body.
Mohammed and Duaa asked the GP to refer Yousef back to the hospital for further assessment, but the GP refused to refer him. Once again, Mohammed, Duaa and Yousef were sent home. They remember feeling angry and frustrated, and like they were being ‘gaslighted’.
Yousef’s fourth attendance at A&E
Later that day, Yousef’s parents noticed swelling and discolouration around his bottom, which looked like an abscess. They rushed him back to A&E, where their concerns were once again dismissed.
It was only when Yousef began struggling for breath that he was rushed into a side room and put on oxygen. With his parents crying by his side, a consultant finally admitted that Yousef might have sepsis. Mohammed remembers saying, “I don’t want him to die.”
“Everything was too slow,” said Mohammed. “Giving him IV fluids, and antibiotics, you could see he was in severe pain. We begged them many, many times to give him something for the pain, but everything was slow. Everything was delayed.”
Yousef was eventually intubated and admitted to the paediatric intensive care unit (PICU) after suffering a vacant episode. Sadly, following several cardiac arrests – which resulted in a lack of oxygen and brain death – Mohammed and Duaa’s little boy passed away from overwhelming sepsis. He had just turned one.
Seeking justice and raising awareness
With the help of Janine Collier, who heads up the Medical Negligence team here at Tees, Mohammed and Duaa are bringing a sepsis negligence claim against Birmingham Children’s Hospital and are working to raise awareness of sepsis and the importance of listening to parental concerns, to ensure a lasting legacy for Yousef.
They said: “Our son was failed. He had many chances to survive, but they were all missed by healthcare professionals. He suffered so much pain and we still suffer from the trauma and horrible pain of losing our precious baby because of a whole system failure, medical negligence and lack of sepsis awareness.
“More must be done to stop the trauma and horror that we and other families have been through. We are very passionate about making a change – all hospitals should be able to follow Sepsis Trust or NICE guidelines and prevent such dreadful outcomes due to a completely curable and preventable illness.
“Parental concerns and repeated visits to A&E are equally important in recognising sepsis. Only together can we change a broken system and raise awareness about sepsis amongst parents and – most importantly – the professionals who are responsible for caring for us and our children.”
Janine, who is working closely with Mohammed and Duaa on their case, said:
“This is yet another devastating instance of how an overwhelmed health system and a total lack of sepsis awareness, has resulted in an entirely preventable death. At just one-year-old, Yousef has had his whole life snatched away from him, leaving his parents’ world in tatters.”
“Nothing will ever replace Yousef or make up for his death. However, we can work hard to secure justice for him and support Mohammed and Duaa as they in turn do everything they can to prevent this kind of tragedy from ever happening to another family.”
