Phoebe's Story

Phoebe’s Story

Phoebe was sure it was a hangover. Her mother thought so too. Phoebe had been out on Friday night, and she was feeling lethargic, looking pale, and vomiting. Over the weekend it turned to looking like flu instead.

But after two days, the seemingly innocuous signs and symptoms had not dissipated. On the Monday, Phoebe’s Mum took her to see a nurse. Her temperature was 39.2 degrees. The nurse examined her and told Phoebe and her Mum it was likely the flu. She was sent home.

Her condition deteriorated again on Tuesday: she was drowsy, feeling hot, had lost her appetite completely, had blurred vision, and was horrendously pale. That evening, Phoebe collapsed in the shower, and her Mum rang Healthline and was advised to take her to see another nurse.

Her temperature appeared normal, as did her blood pressure. Again, they were told Phoebe had the flu – it was going around, they said – and there was no need to send her to hospital. The week passed and Phoebe slowly deteriorated.

The following Monday, Phoebe was still lethargic, and had hardly eaten. She was starting to say strange things. Phoebe’s mother was becoming more and more worried.

A trip to the GP the next day changed her thinking, it wasn’t the flu but the doctor didn’t know what it was. The GP ordered blood tests for the next day and sent them home. Overnight, Phoebe’s Mum kept checking her body for rashes, but there was nothing there.

Early Wednesday morning, this being 12 days since Phoebe first started showing signs and symptoms, her Mum took her for the blood test. Phoebe wasn’t getting better, and after the blood test, rather than waiting for the results or going back to the GP, her Mum made the critical decision to trust her instincts and take Phoebe into Christchurch Hospital’s Emergency Department.

The ED doctor told Phoebe’s Mum it was probably a virus that was causing low iron levels and it was nothing overly concerning. Mum had read an article in the newspaper recently and asked if it could be the meningococcal disease she’d read about, but they didn’t think so. In any case, Phoebe was too ill for them to perform a lumbar puncture test. Phoebe was sent to another ward for observation.

In the afternoon Phoebe got lucky. A student doctor came to take notes. It would be at least another two hours before Phoebe would be seen by a doctor, she said. During her examination, the student doctor shone a light into Phoebe’s eyes and saw something didn’t look right. She returned with her supervising doctor. A CT scan was ordered, showing what looked like a small brain bleed, and they’d like to get an MRI to confirm it.

Another stroke of luck saw the doctor ask a passing neurologist/surgeon to look at the CT scan, and that is when the urgency and seriousness of the situation became immediately apparent.

“She came running in, saying ‘Category 1, this is a life and death situation, your daughter’s brain is swelling and we need to operate immediately or she will die,” recalls Phoebe.

“Mum was in shock. It was all happening so quickly. I was whisked away, leaving Mum standing there not knowing what’s happening, where to go, what to do.”

A nurse took Phoebe’s Mum down to the operating room, where the surgeon explained the procedure: they were going to drill a hole in her head to remove the build-up of fluid around Phoebe’s brain.

“She told Mum: ‘give her a hug and tell her you love her’. Mum was beside herself, I looked at her and a tear escaped from the corner of my eye. Mum hugged me and turned to the surgeon to ask “you’re going to fix this aren’t you?”

“I’ll do my best,” was the surgeon’s response.

Mum waited outside the operating room for two hours, frightened as hell.

The surgeon subsequently confirmed Phoebe had bacterial meningitis. Antibiotics had been administered, and now it was a matter of hoping they worked.

“I was moved to the neurology ward, with 24-hour one-on-one care. I was observed for any brain/memory issues, and any organ and limb effects. Mum was terrified I wouldn’t make it through the night or I’d be severely disabled”.

For the next seven days, Phoebe remained in hospital receiving intravenous antibiotics twice daily, and a blood transfusion.

“It’s an unbelievable stroke of luck I’ve had no long-term effects.”

Ten days after that, Phoebe was back at school – cautiously and somewhat back to normal life. Everyone at school knew what had happened – it was hard to hide the part of her head they’d shaved to conduct the life-saving surgery.

But Phoebe’s near-death experience did have a positive impact – it inspired her friends to get vaccinated. They’d all seen what she went through, and their parents fronted the $300-$400 cost of vaccination.

Of course, Phoebe’s experience still had a long-lasting impact – especially on her Mum.

“It’s taken Mum four years to get over the trauma of that day. She was pretty hard on herself.

“She was upset for not knowing that meningitis can go to the brain – people had only ever talked about a rash. She was also upset for not knowing that the Meningitis B vaccine I’d received when I was four years old didn’t protect me for life. But there was no information available – nothing from our medical centre, and nothing advertised in the public, about teenagers needing another vaccine. Even though the vaccine isn’t funded for me, she would have paid for it herself if she’d known about it.

“The other thing that weighed on her was that she’d put her trust in four medical experts, who all missed it. They were blasé about it being the flu or a virus. It was simply a stroke of luck the student doctor came to see us when she did, and that she was so thorough. The surgeon told me I came within 15 minutes of dying.

“If this disease is so hard to diagnose, and causes death or major disabilities, and massive on-going financial costs for disabled survivors, then why would the vaccine not be funded? At the very least, it should be advertised widely so parents know that a vaccine is available.”

Phoebe’s Mum is now supporting The Meningitis Foundation Aotearoa New Zealand, talking to other parents about the disease and how they can protect their children and young adults. In fact, she and Phoebe recently volunteered to help at the Canterbury University open day. Phoebe’s step-father, Dinghy, is joining the Meningitis Foundation’s Board of Trustees.

Phoebe wants to use her story to encourage others to get vaccinated, and to understand the signs, the symptoms, and the risks.

“For me, it impacted me socially. Afterwards I wasn’t able to do a lot of the things a normal 18-year-old would do. I spent a long time taking it easy and recovering. I still want to know where I caught it, but I’ll never know.”

“We want the Government and PHARMAC to fund this vaccination for all teenagers, not just those going to boarding school or into university halls. I was in high school when I contracted it, and have no idea where from. Fortunately, I’m one of the lucky ones who survived.”

It was a stroke of luck that she did.