“They can be fine at breakfast and dead by dinner.” Those are the chilling words that Kirsten Baker of Meningococcal Australia uses to describe the rapid onset of meningococcal disease.
“Part of the problem is that both meningococcal septicaemia and meningococcal meningitis have similar symptoms to common diseases like colds and flus,” she explains. “Shivering, chills and fever are some of the early signs but one important way that it varies from less serious illnesses, and something parents should watch for, is the fact that the fever doesn’t respond to paracetamol. If your child becomes ill with these sorts of symptoms but the fever doesn’t go away after the correct dose of Panadol, you need to get help fast.”
Kirsten talked to Kidspot about Portraits of Meningococcal, a new campaign just launched with internationally renowned photographer, Anne Geddes. Anne is photographing 15 families from around the world who have experienced the awful reality of meningococcal. She’ll be working with families who have lost loved ones to the illness and with survivors, who are often left with devastating disabilities as a result of their illness.
Who is at risk from meningococcal disease?
Meningococcal disease is fortunately relatively rare in Australia, affecting about 700 people a year. Of those, five to 10 percent will die and 20 percent will be left with long-term consequences, such as limb amputation or decreased organ function.
“You can get it at any age,” Kirsten says, “but young children are particularly at risk because they put things in their mouth and their immune systems aren’t fully developed.”
Fortunately, immunisation has helped, though it doesn’t protect against all strains of the disease. The meningococcal type C vaccine was introduced in 2003 and since then the numbers infected by that strain have dropped, from 162 cases in 2002 to just 9 in 2011. However, the largest number of cases are caused by the type B strain and a vaccine for that has not been available until now. That’s about to change, with news in August that the TGA had approved a vaccine against type B, which will begin rolling out to the public over the course of the coming months.
Images that make people stop and think
Anne Geddes’ work with babies and children has brought her international fame. She says that it springs from a belief in protecting, nurturing and loving young children and so she sees this project as a way to continue that vision. “I wanted all the survivors to look incredible – it was important for me that they look beautiful. I wanted people to look at the image and see the beauty before they think of the disability. This is what I’m hoping to achieve,” she said. “There is so much imagery that’s bland in the world. I wanted to stop people with this series, to make them look at the beautiful girl, then notice she doesn’t have legs.”
In preparing for her work with her first set of portraits, photographed in Sydney last month, Anne read the stories of those who’d been affected by the disease. “I’d read the harrowing stories and wondered how I’d react but it was an incredibly positive, uplifting experience.”
Anne doesn’t only want those who see the images to admire the beauty of the subjects. “I hope people seeing this will think about the illness. Be alert to the symptoms, act quickly and make sure their children are vaccinated. If you’re anti-vaccination, look at these images and think, ‘why wouldn’t I want the best for my children?’.”
Danielle was just 14 months old when she woke in the middle of the night, vomiting and with a high temperature. Thinking it was a recurrence of a recent throat infection, her mother gave her paracetamol but Danielle was unable to keep it down.
The next morning she was so ill Danielle’s Mum rushed her to the doctor, where she was quickly assessed as needing urgent care and taken to Shoalhaven Hospital, then flown to Camperdown Children’s hospital. The doctors there told her mother that they thought Danielle had meningococcal disease and that she probably wasn’t going to live.
Danielle is now 20 and has undergone more than 70 operations as a result of her experience with meningococcal disease: her left arm was amputated at the elbow, her four fingers, palm and half of her thumb on her right hand were amputated and her big toe was grafted onto her hand to give her a grip with half of her thumb. The rest of her toes also had to be amputated and she has had extensive skin grafts on her arms and legs.
Mackenzie was three years old when he fell ill on Easter Monday in 2008.
His family took him to his local hospital where the team recognised the potential gravity of the situation and airlifted him to Cairns. Overnight, Mackenzie’s condition continued to deteriorate and in the early hours of the next morning he was placed into a coma.
Over the next two days, doctors from Cairns Hospital fought to keep him alive and stabilise him so he could be transferred by the Royal Flying Doctors service to the Mater Hospital in Brisbane, where he spent the next two months.
Mackenzie’s experience with meningococcal disease continues to affect him – the disease damaged a growth plate in Mackenzie’s leg which will require further surgical procedures to correct.
Just a few months shy of her third birthday, Bernadette found herself fighting for her life – struck down by the potentially deadly disease, meningococcal B.
The disease took both her legs below the knee, most of the fingers on her left hand and parts of the fingers on her right. It also left her kidney’s damaged: In the early stages she was left with zero kidney function and needed dialysis, though they have now recovered somewhat to an overall function of 40 percent.
The signs to look out for
The symptoms vary between meningococcal meningitis and meningococcal septicaemia and the diagnosis can be further complicated because sufferers can be affected by both septicaemia and meningitis.
Symptoms of meningococcal septicaemia include:
- Shivering, chills, cold hands or feet, skin colour change
- Sudden, severe pain in arms, legs, joints and stomach
- Fever, thirst, nausea, vomiting, maybe diarrhoea
- Drowsiness, loss of consciousness, rapid breathing
- Spots or pinprick rash (develops to purple blotches)
Symptoms of meningococcal meningitis include:
- Severe headache
- Stiff or painful neck
- Sensitivity to light
- Drowsiness, loss of consciousness, convulsions
- A rash may develop in the later stages
In babies, additional symptoms may include:
- Refusing to feed, fretfulness
- Shrill or moaning cry
- Blank and staring expression
- Being floppy or lethargic
- Arching of the body or neck
- Tense or bulging fontanelle (the soft spot of a baby’s head)
“By depicting the courage and beauty of these survivors through Anne’s lens we hope the images will be the catalyst for parents to ensure they are aware of the signs and symptoms,” Kirsten said. “They need to check their child’s vaccinations are up to date and know what to do should they suspect meningococcal disease.”