'I was told I was paranoid. But I was right to be because my baby was incredibly sick'

“That disease altered me as a parent."

Johanna knew something wasn't right with her baby.

What she didn't know was how hard she would have to work to convince others. 

“The head nurse said ‘there's nothing wrong.’ She opened the door to ED and pointed and scored at me. ‘Look, look how busy we are. There's nothing wrong with your baby’," Johanna told Kidspot.

At just 13 weeks old, little Alijana had been a happy baby.

Which is why red flags were waving in full force when the West Australian mum noticed her newborn was drowsy, distressed and not her usual self.

At just 13 weeks old, little Alijana had been a happy baby. Image: Supplied.

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"This was just different"

“I was struggling to feed her, struggling to keep her awake, to have the energy to feed,” Johanna explained.

"She was very uncomfortable, screaming. Just very out of character. I mean, babies cry, but this was just different.” 

That was before she’d noticed spots on Alijana’s torso and groin region. A call to Health Direct didn’t quell her worries, so she called an ambulance after a particularly rough night.

The paramedics said the “baby’s just unwell” and that it would be “a waste of time going to hospital.” 

But her mother’s intuition told her not to take no as an answer.

“I made the decision to kindly take my own child to hospital,” she said.

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"I was told I was paranoid"

When she presented to the emergency department in the early hours of the morning, medical staff echoed the paramedics. 

“I was told I was paranoid,” she recalled.

They were discharged. 

“By the time we got home, it wasn't long after that I called another ambulance,” she said. 

“She was very gray, light sensitive, stiff yet floppy when she was asleep, making gurgling noises when awake and the way she was breathing as well. She was just an unhappy child.” 

Despite being discharged, Johanna was forced to call an ambulance shortly after arriving home. Image: Supplied

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"I was trying to advocate pretty hard for help"

On their return they were forced to wait up to eight hours in a waiting area, alongside other patients. Other children. 

“In that time I was trying to feed her, I was trying to just do whatever I could to make her comfortable, but she was not comfortable," she said.

Staff still weren't entirely convinced. 

“There was the head, one of the head nurses that also had called me paranoid looked at me and said, ‘Weren’t you in here not long ago?’ And me fighting back tears, trying to find my voice... ‘Yeah, I was,’” she said. 

“I was just asking for help. I was trying to advocate pretty hard for help.”

All the while the mother’s suspicions grew that they could be dealing with a contagious and deadly disease. 

“I knew… like, I knew. I knew hours earlier. I begged them. I begged them to rule out meningococcal,” she said.

Finally, the head of the emergency department heard her pleas. 

“They saw her, they looked at me, they said they are 99.9% sure that it's meningococcal,” the mum said. 

"My little girl"

From that point forward the treatment changed. 

“Before you knew it Alijana had cannulas in her. I was being supported and counselled on the risks of cardiac arrest,” she explained. 

The baby was transferred to the ICU and then after almost a week, she was transferred to the high dependency ward. All up she’d be in hospital for 16 days.

“It was an intense period. Like my little girl,” she said. 

“You’re talking about such a horrible disease. So there’s no doubt that a child or anybody is going to feel battered and bruised.”

The experience shook her. But it also made her stronger. 

“That disease altered me as a parent,” she said. 

“A lot of people think, oh man, it's one of those rare things or it doesn't happen… if you're watching your loved one fight for life or you're being told that your child needs you now more than ever, because they think your child is not going to make it that morning. Your opinion changes.”

Alijana is now almost 10, but the disease has left its mark. Image: Supplied.

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It’s made Johanna passionate about educating parents about the disease. About the importance of advocating for your child.

"We know our children. Now we can get it wrong. I would rather get it wrong than be right," she said.

“If I can share the story from a parents perspective of what I saw her go through… I can use our experience to bring awareness. I will do that." 

It’s been a decade since the health scare, but the impact is still profound. 

“There is an acquired brain injury. There are some academic challenges,” Johanna said.

“It’s been a history of continued therapy… occupational therapy, speech therapy, physio, you know, doctor's appointments… fine gross motor skill struggles, coordination struggles.”  

These days Aljana is a bubbly, happy, almost 10-year-old, who loves animals and using her imagination. 

“The disease has left a mark on her… but she's still here,” she said.

Originally published as 'I was told I was paranoid. But I was right to be because my baby was incredibly sick'