Meningococcal survivor Phoebe O’Connell on her battle with illness
One morning she was a carefree student, that night she almost died. Phoebe O’Connell’s survived her battle with meningococcal and in recovery received the gift of life from her mum.
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At first glance, Phoebe O’Connell is a picture of health. With sparkly green eyes, an easy smile and slicked-back platinum blonde hair, she presents as one sassy 18-year-old. And sassy she is, but hers is a spirit borne out of beating a disease that should have killed her.
Phoebe is a meningococcal survivor.
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However, the ravages of this cruel and vicious infection – which strikes at random and causes the body’s organs to shut down within hours – will be with her for life.
“Excuse my hands shaking,” she says, when we meet at her family’s riverfront home in Bulimba, in Brisbane’s east.
“I’m not nervous, it’s the effect of the drugs.”
This is the first in-depth interview the University of Queensland student has done since being struck down with the Y strain of the disease on November 28, 2018 – three days before her 18th birthday party.
From a carefree teen who believed she was bullet proof, she now takes more than 20 pills a day, including steroids and anti-rejection drugs for the donor kidney that rests just below her belly button.
Phoebe’s own two kidneys – shrivelled and useless – remain in the usual position, towards her back. Her spleen is gone, making her dangerously susceptible to infections through a permanently compromised immune system, and she suffers post-traumatic stress disorder from the ordeal she describes as “horrific”. Nerve damage to her hands make it difficult for her to do simple tasks, and long sleeves cover the angry red scars on her arms from the advanced septicaemia that accompanies this most brutal of diseases.
Miraculously though – miracle being a word Phoebe has heard frequently in the past eight months as she has defied medical predictions – she did not lose her nose, fingers or toes, as doctors told her she would. She did, however, lose her hair, something she struggles with daily.
“Since I was a little girl, I was always known for my long hair and, as a female, your hair can define you,” she says. “It’s growing back, but I’ve realised there are more important things than how you look. I am very lucky to be alive. I wasn’t expected to make it, at all, because I was past the stage that they could save me.
“When you’re 18, you think you are invincible, that nothing can hurt you. I didn’t even know what meningococcal was, but the toll it has taken on my body, my mind and on my family is huge.
“People see me and I look OK, so they think everything is fine, but nothing will ever be the same.”
Meningococcal occurs when bacteria, carried in mucus, invades the body after being transferred through close contact, such as kissing, coughing or sneezing.
Carriers are typically unaware that they have it. People have been afflicted after attending concerts and festivals, and living in confined quarters such as boarding schools, university dormitories and the military. One in 10 sufferers will die from meningococcal, while up to 30 per cent will sustain permanent injury and disfigurement, including loss of limbs, blindness, deafness and brain damage. Those most at risk are small children, teenagers and young adults, though it can strike at any age. In Queensland, there have been 264 cases of meningococcal since 2014, and experts warn that an epidemic is looming. The known strains in Australia are A, B, C, W and Y and the only prevention is vaccination – against all five.
Phoebe had been immunised against meningococcal B. As a baby, she’d also received the C vaccine. But when Y took hold of her, with flu-like symptoms showing on that fateful Wednesday morning, neither she nor her family could have imagined the horror that would rapidly unfold.
In a cruel twist, Phoebe’s mother Katy O’Connell, a former intensive care nurse, had been discussing immunisation the day before with a pharmacist friend, who sent her this text: “This is the vaccine you need to get for Phoebe – ACWY.”
Katy’s other child Chloe, then in Year 11 at All Hallows’ School, had received the ACWY jab the year before through a previously state-funded, school-based program.
“We didn’t even have time to act for Phoebe,” says a distressed Katy. “It was something I was planning to do, but the very next day, it got her. The guilt I feel is overwhelming.”
The day everything changed
When Phoebe, who had just finished her first-year exams towards a degree in Occupational Health and Safety Science, “bounced downstairs, as she does, driving us nuts with her energy” at breakfast time and complained of a headache, Katy shooed her up to her room with some paracetamol.
“I didn’t think anything more of it, and around 10.30 I went food shopping for her 18th party,” says Katy, 50, who teaches cardiopulmonary resuscitation and first aid through her company Link PRC. Phoebe’s father Brian O’Connell, 58, is a specialist anaesthetist in private practice.
“Around lunchtime, I got a frantic call from Chloe, who was home studying for her exams, and she said, ‘Mum, Phoebe is really, really sick. Can you come home urgently?’ I dropped everything, raced back and found Phoebe motionless in her darkened bedroom.
“It was so frightening – when I left home she seemed well, but within a few hours, she had a fever of 39.9C, she was shaking horrifically, crying with abdominal pain, headache, neck ache, and saying she couldn’t get out of bed because her legs were too weak.
“Her body was failing her,” Katy says. “That’s the awful thing about this disease, it renders you incapable of moving. If she’d had been alone, she’d have died in her bed.”
Phoebe had the telltale symptoms of meningococcal and was rushed by ambulance to the Mater Private Hospital, where she was eventually diagnosed with Y. Her father arrived that evening and watched, in horror, as Phoebe’s nose, ears, fingers and toes turned black and her body became covered with a reddish-purple rash – evidence of advanced blood poisoning.
“I saw the rash start to appear, first under her lip, and then within the hour it was all over her,” says Brian.
“It’s something, as a father, I can never ‘unsee’ and, as a doctor, I was helpless to fix.”
Brian still can’t bear to see the scars on his daughter’s once perfect arms because it takes him straight back to that ICU ward and to just how close it came to losing Phoebe.
“We couldn’t bring ourselves to look at our beautiful girl in the ICU,” Katy recalls. “Being in the medical profession, we both knew that with severe meningococcal septicaemia the chance of survival was minimal. We just held hands and told the staff to do what they could. We were completely shattered.”
Phoebe’s shocking appearance, however, was nothing compared to the havoc the disease was wreaking inside her body. Clots were blocking the blood supply to her organs, destroying them one by one. Her spleen was the first to go, then her kidneys, and she required dialysis to stay alive. She also contracted pneumonia. But she never gave up.
“I’m not sure why, but probably because of the support of my family and friends, I took everything on board as it happened to me and stayed kind of neutral,” says Phoebe, who was conscious throughout the entire ordeal.
“I was in incredible pain, my heels were aching, like frostbite, I had severe nerve pain all over, and I couldn’t swallow or talk because my tongue and all inside my mouth were black and swollen.
“One time when I closed my eyes, I saw dead people at my bedside, people who had passed, including my grandad and my godfather. I wasn’t sure why they were there, but I now think it was to keep me safe, which sounds kind of weird, and I kept on fighting.”
GIFT OF LIFE
After six weeks in hospital – three of them in intensive care – Phoebe was told she could go home, in a wheelchair, and with around-the-clock care from her family. That wasn’t all. She would need a kidney transplant.
“I wasn’t afraid of the truth,” she says, “I wanted to know. When you’re in hospital for so long it can be dehumanising – there are doctors standing around discussing your body, and you want to shout, ‘Hey, I’m still here, I’m a person, and I need to understand everything’.”
Phoebe was told her own kidneys would never recover, but that with the addition of one good kidney, she could live without the dialysis she’d come to dread – a five-hour procedure that filters and cleanses the blood three times a week.
Her mother was first to volunteer.
“I couldn’t put my hand up quickly enough – take mine, take mine – just do it now,” Katy recalls. “People say it’s selfless but, seriously, what parent wouldn’t do it?”
In the weeks of testing that followed to confirm Katy’s blood and tissue compatibility, other relatives and several of Phoebe’s friends volunteered to be donors.
“It’s incredible how much everybody just wanted Phoebe well again,” Katy says. “I burst into tears of happiness when I found out I was a match, I rang everyone I knew, I was so excited.”
The operation, at Princess Alexandra Hospital on May 27, was a success and Katy was discharged three days later – on her 50th birthday.
“We don’t know how long Phoebe will have this kidney. We’re told anywhere from one year to 45 years – but right now, we’ve got our daughter back and every single day is precious.
“Brian and I can’t believe how totally accepting Phoebe has been of everything that’s happened, it’s like ‘wow’, we look at her and say, ‘where did that strength come from in that child because neither of us can take credit for that’.”
If there is a silver lining to Phoebe’s battle with meningococcal, aside from her miraculous survival, it is a wisdom that belies her 18 years.
“I see things very differently now,” she says. “I realise that if you don’t have your health, you have nothing, so it makes me upset when I see kids my age drinking and drugging and harming their bodies.
“I’ve been given a second chance at life and I am not going to waste one minute of it.”
After weeks in a wheelchair and extensive muscle wastage, Phoebe has learnt to walk again and, earlier this month, she went for a short jog. While she will never play contact sport (including her beloved hockey) due to the delicate placement of her new kidney and her own fear of losing it, and her weakened immune system prevents her from visiting countries where disease is rife, Phoebe is focused on the present, and on completing her studies.
“I tried to go back to uni three months after meningococcal, but I was too sick and on dialysis three times a week; I just left the lecture theatre and cried my eyes out, but I’m ready to try again, in semester two.
“For me, it is important that people see me not as ‘that girl who had meningococcal’ but as a normal person. I am struggling with PTSD, I’m scared of being left alone – in case I get sick and no one is there to help me – and I don’t know what the future holds, but I want to get on with my life.”
To this end, Phoebe, supported by seven of her closest friends, will take part in the Amazing Race Around Brisbane on Sunday, July 28. The fun run is organised by DonateLife to raise awareness of organ donation.
“I was so lucky to be able to have Mum’s kidney, I can’t thank her enough. Plenty of people die while waiting for a transplant,” she says.
But the biggest message Phoebe wants to share is around vaccination, against all five strains of the disease she describes as “the worst thing ever”.
“If you’re a fit and healthy person, you’re not going to go see your GP, but you can’t wait until you’re sick – getting immunised is the only way to prevent meningococcal.
“All the vaccines should be funded so everyone can afford them. I feel so sad for the people who have died, and for their families who are left behind,” Phoebe says.
“I often feel guilty that I am still here, that I’ve been saved, but at the same time I am really grateful as I know I am one of the lucky ones.”
PUSH FOR NEW VACCINES
Meningococcal can be difficult to diagnose because early symptoms are similar to those in other illnesses: fever, headache, stiff neck, joint and muscle pain, nausea, vomiting, and sensitivity to light. It is transmitted, through bacteria in the nasal passages, via close contact such as kissing, coughing and sneezing, and the only prevention is vaccination – against all five strains, A, B, C, W and Y.
From April this year, following an ongoing The Courier-Mail campaign for free immunisation alongside Kirsten McGinty, whose 20-year-old daughter Zoe died of the W strain in 2017, the Federal Government funded the ACWY quad-vaccine for Year 10 students, as well as a catch-up jab for 15-19 year olds who missed it at school. It is also free for infants at 12 months of age. For everyone else, it costs $75.
The B vaccine, Bexsero, is yet to be federally funded because it needs to be approved by the Pharmaceutical Benefits Advisory Committee before it can be added to the National Immunisation Program. A new application was put before the PBAC this month by its manufacturer, GlaxoSmithKline, and will closely watched by Federal Health Minister Greg Hunt, who has promised the green light, if approved.
Queensland has refused to fund the B vaccine, which costs upwards of $120 per jab, with up to four injections required. But Opposition Leader Deb Frecklington has pledged funding for a targeted B vaccine if elected.
Australia’s leading infectious diseases expert, Professor Robert Booy, this month called on the PBAC to approve Bexsero to save lives and reduce cases.
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