Meningitis in your words

Kaya Luna Aisake 's story

  • Location: Australia
  • Categories: Bacterial meningitis, Group B meningococcal (MenB)
  • Age: Child 6-12
  • Relationship: Child
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Kaya Luna Aisake
Kaya Luna Aisake  - Meningitis in your words

Meningococcal Meningitis Survivor – Kaya Luna Aisake – Born 21/11/13


The life of Kaya Luna (so far)

For eight years, I’ve cried on my daughter’s birthday. As each year of life passed, I have been slowly letting out the carefully compartmentalised pain and it’s become a blurry mess of colourful hurt. Now that she’s turning ten, it’s time to let the colours run free and let it all go.

It was the 18th of April, 2015 and Kaya was almost a year and half. She started showing signs of illness - refusing to eat or drink and had developed a fever. We called 'Nurse on Call' and described her symptoms. They suggested it might be gastro, and we trusted their judgment and didn’t want to overreact.

A midnight discussion followed, as my motherly instincts urged me to take her to the emergency room. I couldn't explain it, but something didn't feel right. After some persuasion, we decided not to go, although the "what if’s" haunted me for a long time.

We followed the advice from ‘Nurse on Call,’ cooling her in a bath to bring down the fever, and it worked temporarily. Kaya drank a full bottle of milk on Sunday morning, and we hoped that she was on the mend. She wasn't interested in walking or crawling, but we thought it was just part of her recovery.

On the morning of April 20, I woke up, looked at Kaya, and rushed her straight to the local GP. The doctor, calm and perceptive, took one look at her and urgently sent us to the nearest emergency room. Kaya's guttural wails of pain had become a constant dirge, a heartbreaking sound that signaled something terribly wrong.

In the emergency room, a pediatrician examined her. He asked her to walk, and although she resisted, her zombie-like walk confirmed his suspicions. Something was seriously wrong. The urgency in the room escalated, and they started treating her for meningitis without waiting for tests.

Time was crucial and each minute seemed to matter when it came to meningitis. They struggled to find a vein for the intravenous antibiotics, eventually locating one in her foot. Nurses played the Wiggles to distract her from the needle, and we found ourselves in a makeshift ICU (intensive care unit). We had initially taken her to the closest hospital, unaware that a children's ICU was necessary. They assigned a nurse to be with her 24/7 until she stabilized. We were there, but we felt like ghosts unable to fully absorb the gravity of the situation.

Kaya underwent a lumbar puncture, a painful procedure that required two men and her father to hold her down while they inserted a needle into her spine to withdraw fluid — the only way to confirm meningitis. She came out of that test with tiny self-inflicted cuts on her forehead, a testament to her fierce resistance. Tests confirmed she had meningococcal meningitis B. They administered various antibiotics throughout the night, it was all a blur.

The following day, the doctor casually mentioned that it seemed Kaya would make it, which made me realize I hadn't even considered the possibility that she might not. Meningococcal meningitis was far more serious than I had ever imagined. I began researching, but the information I found was overwhelmingly bleak and I quickly stopped.

She spent nine days in hospital. Her dad stayed with her every night, an unwavering display of commitment and love for his daughter. I couldn't have done it, in fact, I really disconnected myself from the whole experience in order to persevere through it.

Our experience with meningitis devastated our family in many ways, but it also gave us all a delicate respect for human life. It showed us that through resilience, research and perseverance that you can literally love someone back to a new life. It also pertinent to point out that Kaya suffered from a vaccine preventable disease, that was available in 2015 for us to purchase had we known it existed.

Kaya in hospital bed

When we were discharged, we essentially took home a 15-month newborn. She couldn't walk, talk or stand anymore. We were told she would need months of physiotherapy to regain her lost skills. Remarkably, Kaya made a swift recovery in terms of walking, and I may be one of the few mums who can say they witnessed their baby take their first steps, twice. The first night back home was brutal. Kaya screamed inconsolably, unable to sleep unless she was on her father's chest.

We had numerous follow-up appointments, including a hearing test. It was during this test that we received devastating news. Kaya had lost most of her hearing in her right ear and a significant amount in her left.

After an MRI (magnetic resonance imaging)
, early bone growth was detected. This led to an urgent scheduling of Kaya’s cochlear implant surgery whilst it was still possible. It happened in a whirlwind of medical jargon, waiting rooms, and finally, the surgery that would allow her the chance to hear once again. But it wasn't a simple fix.

Initially, we were advised by the cochlear implant clinic to not use sign language to avoid delaying her speech. (They have since changed the advice they give to parents regarding this.)

For the next two years, we explored every speech therapy and alternative method available, researching and trying everything in our power. I even considered quitting my job to talk to her all day inspired by a father in the US that I read about who had done so successfully. Then, we met Dr. Georgia Paxton from the Royal Children's CHIC (Caring for Hearing Impaired) clinic, who recommended sign language for Kaya. We moved her to an Auslan kinder, and she began signing and, eventually, talking.

Giving her communication was like giving her a voice, and I deeply regret not trying it sooner.

Now, as Kaya turns ten, looking back on it all, she is a luminous flashing light of resilience and determination. Started talking at four, started school at five, top of her class at ten and is now fluent in both English and Auslan.

Currently the meningococcal B vaccine is not on the National Immunisation Program.

It remains as an optional vaccination that families can purchase. I wish I had known.

Candice Patrick
November 2023

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