A mum whose baby was sent away from hospital with Panadol despite having classic symptoms of meningitis is warning parents to ‘stand up for their children’.
Shiva Motlagh-Elbakri took her then four-month-old daughter Mytilini to Queensland Children’s Hospital on their GP’s advice in June 2022.
The infant had also been arching her back and stiffening up every time her mum had tried to place her in her pram or change her nappy – which are symptoms of meningitis.
Mytilini had already suffered a respiratory virus in the previous 12 days, but wasn’t getting better and was screaming in pain – prompting her mother to take to the doctor, who discovered she had 39.1C fever.
‘We got (to QCH) at about 3pm and she was given Panadol which brought the fever down. She ended up seeing a doctor at 6pm and then until we were discharged by 7.15pm,’ Ms Motlagh-Elbakri told Daily Mail Australia.
Shiva Motlagh-Elbakri took her then four-month-old daughter Mytilini (pictured) to Queensland Children’s Hospital on their GP’s advice
Despite her concerns, she said the hospital only did a urine sample and told her that babies with meningitis must have a bulging fontanelle – which are soft spots on an baby’s head.
Because Mytilini didn’t have this symptom, her mother was told it must just be a virus.
‘According to what I now know, that’s a late sign and there are specific reasons for babies that age to not have a bulging fontanelle because of gravity,’ Ms Motlagh-Elbakri said.
She said she was told that a hospital can’t give a lumbar puncture, which would determine if a patient had meningitis, to every baby that has a fever.
‘But the thing is that’s wrong,’ she said.
‘There are specific guidelines from Queensland Health… according to the guidelines, they should have given her a lumbar puncture.’
Mytilini did not improve over the next couple of days and became very lethargic.
When her mum felt her head in the cot, she discovered her fontanelle was bulging ‘like an egg’.
They rushed back to QCH, where Mytilini was immediately treated with IV antibiotics and made a full recovery.
‘I will always be thankful to the doctors who saved my girl’s life that night, and to the infectious diseases doctors and the paediatrics team who treated her as she recovered slowly over the next 12 days,’ Ms Motlagh-Elbakri said.
‘I am grateful for every second with my daughter now – I know that she was truly lucky to recover, and I recognise that not every family will have that experience.’
A spokesman for Queensland Health said: ‘This case has been investigated three times (including two external reviews – one by the Office of the Health Ombudsmen) and all reviews found no fault with the care provided by Queensland Children’s Hospital.’
But the doting mother-of-two – she and her husband Ahmed also have a son who is 11 months older than Mytilini – is not prepared to let it go.
‘I do really believe that she had meningitis the first time and I want to understand why because I really want to make sure this doesn’t happen again. I didn’t think it was a coincidence,’ she said.
In a letter Ms Motlagh-Elbakri sent to Queensland’s Health Minister Shannon Fentiman, she said her daughter ‘was treated 48 hours later than she should have been’.
‘The signs were truly there, and I was saying it to the doctors at QCH, but I wasn’t listened to. My concern was not taken seriously.’
She also claimed the Queensland Health Guidelines were not properly followed.
But Ms Fentiman told 7News that ‘The advice from those reviews (was) that the care, at the time, was appropriate.’
Ms Motlagh-Elbakri has now lodged an appeal with Queensland’s Health Ombudsman, because she fears that what happened to her daughter will happen to other children and the outcome could be far worse.
‘I genuinely don’t want this to happen to other families,’ she said.
As well as campaigning on the issue (October 5 is World Meningitis Day), Ms Motlagh-Elbakri also lives with the constant fear of the long-term impacts meningitis may have on Mytilini.
‘Every day I worry about the impacts this delayed treatment will have on her future,’ she said.
Shiva Motlagh-Elbakri (pictured right) worries every day about her daughter Mytilini (pictured left)
Mytilini (second left) is pictured with her mum, Shiva, brother, Menam, and dad, Ahmed
‘It’s more than a 50 per chance that she will have some kind of learning or cognitive or behavioural deficit as a result of this.’
Ms Motlagh-Elbakri advises other parents who may be caught up in a similar situation to ‘advocate for your child’.
‘If you think that they’re not acting normally, make that really clear (to the doctors), because you know your child best… a baby cannot speak (for themself).’
Daily Mail Australia has contacted Ms Fentiman for further comment.
WHAT IS MENINGITIS?
Meningitis is inflammation of the membranes that surround and protect the brain and spinal cord.
Anyone can be affected but at-risk people include those aged under five, 15-to-24 and over 45.
People exposed to passive smoking or with suppressed immune systems, such as patients undergoing chemotherapy, are also more at risk.
The most common forms of meningitis are bacterial and viral.
Symptoms for both include:
- Pale, blotchy skin with a rash that does not fade when compressed with a glass
- Stiff neck
- Dislike of bright lights
- Fever, and cold hands and feet
- Vomiting
- Drowsiness
- Severe headache
Headache is one of the main symptoms
Bacterial meningitis
Bacterial meningitis requires urgent treatment at hospital with antibiotics.
Some 10 per cent of bacterial cases are fatal.
Of those who survive, one in three suffer complications, including brain damage and hearing loss.
Limb amputation is a potential side effect if septicaemia (blood poisoning) occurs.
Vaccines are available against certain strains of bacteria that cause meningitis, such as tuberculosis.
Viral meningitis
Viral is rarely life-threatening but can cause long-lasting effects, such as headaches, fatigue and memory problems.
Thousands of people suffer from viral meningitis every year in the UK.
Treatment focuses on hydration, painkillers and rest.
Although ineffective, antibiotics may be given when patients arrive at hospital just in case they are suffering from the bacterial form of the disease.
Source: Meningitis Now
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