I almost lost my son to meningococcal: Seven years on he’s still suffering health issues from the disease – here’s what I want all parents to know

• Chevy, 10, caught meningococcal when he was aged three
• He was placed in a coma and in hospital for five months
• Chevy beat the disease but still suffers adverse effects 
• READ MORE: The sinister and deadly meaning behind this ‘innocent’ red mark on a baby’s leg: Paramedic’s warning to parents

A mum who almost lost her son to meningoccocal has told of how the disease is still affecting his life seven years later, and her regret at not checking whether his fingers and toes were cold from blood loss. 

Stephanie Ryder said Chevy woke up like normal one morning back in 2016 but quickly lost all his energy and then refused to eat or drink. 

Within hours the Perth mum-of-three spotted a rash and quickly rushed the then-three-and-a half-year-old to the emergency department where doctors immediately suspected and started treating him for invasive meningococcal disease (IMD). 

Chevy’s conditioned rapidly worsened to the point his blood stopped circulating to his extremities, his oxygen levels were dangerously low and his organs started to fail.

He was put into a medically-inducted coma, had to have several fingers and toes and his whole right foot amputated, and spent five months in hospital recovering. 

Stephanie Ryder (left) said her son Chevy (left) is still dealing with the side effects from the invasive meningococcal disease that almost claimed his life seven years ago 

When he was three years old Chevy woke up feeling unwell – by the evening his organs went into failure and he was placed in a medically induced coma 

Stephanie said she was a ‘mess’ throughout the ordeal, grappling with the possibility she could lose her son, leaving the details of the early events blurry in her memory. 

She wants parents to educate themselves on the signs and symptoms of IMD and listen to yourself if you think something is wrong. 

Chevy’s initial signs were similar to those of common viruses but Stephanie now wishes she had checked to see if his fingers and toes were cold from blood loss.

‘It’s hard especially when a doctor tells you it’s one thing and there are so many different flus and viruses out there,’ Stephanie said. 

‘Believe in yourself and if you don’t think something’s right, even if you’ve seen a doctor, go to the hospital anyway.’

‘When he woke up, he was his usual crazy self and then it got to between 8 and 9am and he was really lethargic,’ Stephanie told FEMAIL as she explained how the ordeal began. 

‘He just lay on the couch and didn’t want to move, he just wanted cuddles and that was what it started with.’

As the day progressed, Chevy stopped eating and drinking, vomited a couple of times and his temperature started to climb so Stephanie gave him Panadol and Nurofen.

The 35-year-old called a GP who came to the home and said Chevy most likely had a stomach bug and advised Stephanie to keep monitoring him closely. 

‘It got to about 7:30pm, I was checking on him all the time. He was in bed and when he rolled over the covers came off a little bit and I noticed a little rash spots, they were quite little tiny purple spots,’ Stephanie said. 

The rash was the final straw that caused Stephanie to rush Chevy to the hospital as she knew it could be a sign something serious was going on. 

Stephanie was by Chevy’s side as doctors came to check on his progress, monitor the legion on his brain and check to see if his circulation would return to his hands and feet

‘The only reason I was educated is because my mum lost a friend to meningococcal when she was a teenager so she had kind of drilled it into my head,’ Stephanie said.

By the time Chevy was with doctors, he so weak and lethargic, he wouldn’t speak and his rash has spread ‘quite a bit’ over his body. 

Thinking back to the first night in the hospital Stephanie’s memory is a haze of doctors and nurses, tests and worrying statistics. 

Doctors quickly started treating the boy for IMD before tests confirmed. 

Chevy’s oxygen levels were very low and his blood was leaving his limbs and digits to try and save his failing organs. 

‘(Doctors) were giving me his chance of survival rates and asking about antibiotics. They did give us the impression he wasn’t going to make it,’ Stephanie said. 

‘I wasn’t coping at all. I was panicking and feeling physically ill, we basically thought he was going die.’

Get to know the signs and symptoms of meningococcal

Meningococcal disease can progress rapidly and be hard to diagnose.

Meningococcal disease is a rare but potentially devastating infection that can progress rapidly, causing serious disability or death within 24 hours.

It is caused by a bacterial infection of the blood and/or membranes that line the spinal cord and brain.

It can progress rapidly, beginning with symptoms such as fever and irritability that are easily mistaken for a common cold.

The distinctive meningococcal rash is an advanced symptom of blood infection, which may or may not occur.

Most children survive meningococcal disease, but if it is not diagnosed or treated quickly it can lead to serious long-term disability or death within 24 hours.

Early symptoms of meningococcal disease can be difficult to recognise as they may be similar to a cold or the flu.

Common symptoms of meningococcal disease amongst babies and young children may include:

• High fever
• Refusal to eat
• Difficulty waking or extreme tiredness
• Vomiting 
• Pale, grey or blotchy skin
• Cold hands and feet
• Sensitivity to light

In babies only:

• High-pitched moaning cry
• Bulging fontanelle (soft spot on top of the head) 

Source: Know Meningococcal

Once he was stable, Chevy was moved to the Perth’s children’s hospital and put into an induced coma due to a swelling on his brain and to help his body fight the infection.

Stephanie was by Chevy’s side as doctors came to check on his progress, monitor the legion on his brain and check to see if his circulation would return to his hands and feet. 

By day three, they were starting to see improvements which offered the parents hope. 

‘It was very up and down, even when he was in the coma, they were doing tests and he even had dialysis because his kidneys weren’t working,’ Stephanie said.  

‘They didn’t know brain-wise how he would come out of it.’ 

Over a week later when Chevy woke from the coma he was surprisingly chipper.

‘He was completely himself and that was one of the things that was the biggest relief. He was talking and being his normal self,’ Stephanie said.

However, Chevy still had a long road ahead of him in hospital.

Ten days after he was placed into a coma Chevy woke up chipper and ‘back to his normal self’ but had to spend five months in hospital recovering (pictured with his dad and older brother)

As the tissue had started to die and wouldn’t recover, Chevy had the top half of his fingers on his left hand, some toes on his left foot and his whole right foot amputated. 

His rashes had turned into burn-like blisters which had to be dressed and treated every day and he had to learn how to strengthen his muscles from being confined to his hospital bed for so long. 

Chevy was able to fight off the terrifying disease and go from strength to strength to finally be able to leave hospital in January, five whole months after that first night in the emergency room.

Now 10, Chevy is still suffering adverse effects from the potentially fatal disease he caught as a kindergartener.

An ‘incidental’ brain lesion doctors suspected may have swelled because of the illness has caused some hearing loss, while the growth plates in some of Chevy’s bones were damaged. 

This means some of his bones, like one in his left forearm, will not grow with the rest of his body and he will need bone lengthening surgeries. 

READ MORE: Doctors asked me if I wanted to turn my son’s life support off five times but I refused and now he’s thriving

Chevy already had his first procedure last year which was painful and traumatic for the pre-teen.  

‘His hearing we only found out a year ago and even the bones thing was only a year or two ago. Every year something new comes up,’ Stephanie said. 

Chevy also has anxieties around illness and the meningococcal dented his confidence. 

‘He doesn’t like to talk about it a lot. I think that’s just because he doesn’t want to think about. It’s simple things like he used to love riding his bike when he was younger but now he thinks he can’t do it,’ Stephanie said. 

‘He said to me the other day something like, “meningococcal took my talent away”. We’re just trying to encourage him.’

While it will be a guessing game as to how Chevy will continue to develop the family remain positive that he can regain his confidence and live a happy and healthy life. 

While it will be a guessing game as to how Chevy will continue to develop, the family remain positive that he can regain his confidence and live a happy and healthy life (pictured with his younger sister)

Another unknown is where Chevy picked up the disease which can present as asymptomatic in some people. 

‘They say people carry it in the back of their nose and throat and he did go to day care but there are hundreds of kids there. I don’t think we’ll ever know,’ Stephanie said.

‘I think that’s the worst thing about it; that it’s unpredictable and every child will get different outcomes from it.’

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