A healthy little girl tragically died after developing a headache, fever and stomach pains, an inquest has heard. The family of ‘kind and creative’ Maryama Hussein, aged just five, initially thought she had a ‘tummy bug’ when she was sick on September 25 last year.
The year one pupil was taken to the emergency department at Birmingham Children’s Hospital after her condition deteriorated over the next four days. As she arrived at the hospital the family were forced wait for almost two hours as an ‘incorrect’ assessment deemed her stable enough to wait amid a high volume of patients, the inquest heard.
Sadly, it was determined nothing more could be done to save her on October 2 and she died from a cerebral edema (fluid around the brain) caused by acute disseminated encephalomyelitis (ADEM) ten days later. The tragedy was detailed at an inquest on Monday, March 14.
Birmingham Coroner’s Court also heard of “gaps in her care”, including delays in seizure treatment and in transferring her to the intensive care unit, though the inquest concluded ‘on the balance of probabilities’ that this did not contribute to or cause her death.
In a heartfelt tribute, her mum told the inquest: “She was a kind, caring and creative child and had a special bond with her brothers and sisters. She had just started year one and she was doing really well at school.
“She made friends easily and she was looking forward to her return to school. She was a healthy five-year-old.”
Maryama became ill on Saturday, September 25, vomiting early in the morning and suffering from a tummy ache for the whole day, the inquest was told.
What is ADEM?
Acute disseminated encephalomyelitis (ADEM) is a rare inflammatory condition that affects the brain and spinal cord. It often follows on from a minor infection such as a cold, and is the result of the immune system becoming mis-programmed, and activating immune cells to attack the healthy myelin (a fatty protective coating) covering the nerves
What are the symptoms of ADEM?
ADEM usually comes on quite quickly over hours to days. Symptoms may include nausea and vomiting, headache, irritability and sleepiness, unsteadiness or inability to walk, problems with vision, weakness or tingling in certain areas of the body. In severe cases seizures can result. The symptoms depend on where in the brain or spinal cord the inflammation and swelling is occurring.
Initially her parents thought she had a ‘tummy bug’, but on September 27 she developed a fever – which continued into Monday and Tuesday. She was off sick from school, instead spending the days being cared for by her father.
She was given paracetamol when her fever spiked, but was still walking around and acting like her normal self. When her mother checked in on her “first thing in the morning”, she told her she was “feeling dizzy” – it was sadly the last time she spoke to her.
“I carried her downstairs to the kitchen. That’s when I checked her temperature and realised it was 39C. I gave her paracetamol. She slept in the kitchen,” she told the inquest.
“She took a little nap for a while. Around 7.45am, she woke and wasn’t looking at her brothers and sisters. She would be looking up then wanted to lie down. I realised there was something wrong so I called the GP at 8am.
“I kept repeating that there is something wrong with her.”
Maryama was taken to the earliest appointment at the doctors, where the GP told her parents to take her daughter to the emergency department for further observation and investigation. The family arrived at Birmingham Children’s Hospital at 1.50pm.
Once there, they were advised they would have to ‘wait six to eight hours’ as A&E was flooded with a large volume of patients – part of a national issue amid the pandemic, the coroner’s court heard.
They waited almost two hours after a triage assessment ‘incorrectly’ deemed her fit, to wait to be seen. This triage category was branded ‘inappropriate’ by Dr Elizabeth Wilson as she gave evidence, alongside other medics, at the inquest.
Maryama was checked over for a second time by a nurse at 3.40pm after her mum told her “there’s something seriously wrong she is in and out of consciousness”. She was then rushed through to the emergency department, after which a CT scan was carried out.
She had her first fit in the emergency department, with her limbs stiff and her grinding her teeth. She was given anti-seizure medication at that stage and admitted to the paediatric assessment unit.
The seizures became “quite intense” on the following day, September 30, with the mum recording the fits on her phone to show the nurses.
“I was told they would admit her to the ICU but that didn’t happen,” she said. After a delay, she was transferred to the ICU on October 2 and the maximum dose of methylprednisolone was administered.
Later the same day it was concluded the swelling on her brain had caused “too much damage”, the court heard. Further tests were carried out and a second opinion was sought, but nothing could be done to save her. She died on October 12.
Senior Coroner Louise Hunt concluded that “clearly there have been some gaps in her care and there were some concerns that things did not happen as they should.”
However, she told the inquest that, “on the balance of probabilities”, they did not cause or contribute to Maryama’s death – which happened due to natural causes.
Mrs Hunt said: “Maryama was previously a fit and well little girl. She first became unwell on September 25. She had been sick and her family thought she had a tummy bug.
“She was seen by the GP at 12.44pm and there was concern she may be suffering from sepsis or meningitis.
Sepsis symptoms in children under five
Go straight to A&E or call 999 if your child has any of these symptoms:
- looks mottled, bluish or pale
- is very lethargic or difficult to wake
- feels abnormally cold to touch
- is breathing very fast
- has a rash that does not fade when you press it
- has a fit or convulsion
“She was advised to go to Birmingham Children’s Hospital. They felt she was stable to wait. We know from the internal investigation that was an incorrect assessment and she should have been seen sooner.”
The coroner added: “On examination [by the doctor] it was clear she wasn’t responding appropriately.”
A CT scan discovered a cerebral edema as a result of the ADEM and she was given the recognised treatment for the diagnosis. A lumber puncture was also carried out. There were differing opinions from medics on the ‘movements’ she was experiencing, the inquest heard.
“The reason why admission [to ICU] was important is because it was a way she would be able to be provided with further medication for the seizures and further monitoring,” Mrs Hunt added.
She was admitted on October 2 where she was intubated, ventilated and given medication for ADEM by 10am. The treatment continued, but the seizures were not being controlled, the inquest heard.
The situation was deemed ‘irretrievable’ as she suffered a severe brain injury and sadly could not be saved.
Mrs Hunt added: “She remained in ICU and the family, understandably, wished for a second opinion but sadly this confirmed nothing more could be done for her. As a result she sadly passed away.
“There is no evidence before me that any one lack of treatment identified caused or contributed to her death when judged on the balance of probabilities.”
Birmingham Women’s and Children’s NHS Foundation Trust vowed to “act on” the gaps in her care as it offered its sympathies to the family.
Dr Fiona Reynolds, the Chief Medical Officer, said: “We would like to share our sincere sympathies with the family at the sad death of Maryama and reassure them that we will act on what they have told us we could have been done differently in her care.”
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