Meningococcal left Arthur Long fighting for his life

Click, click, click. The camera shutter whirs.

“Going to show us your teeth Arthur,” mum Carly asks, and the two-year-old grins like a Cheshire cat.

The shutter whirs again but Arthur is off, running on his knees, as fast as any boy his age, and tearing into a bag of toys to find his favourite digger.

You have got to be quick to capture this ball of energy and photographer Paul Scambler is earning his money today.

Timing has been everything in Arthur’s life: how quickly he got to hospital as meningococcal ravaged his little body; the critical hours it took to transfer him to Melbourne when doctors couldn't guarantee he would survive; 10 days in an intensive care coma; six months away from his Riverside home.

There will be more operations and procedures to add to the 25 general anesthetics but a relatively simple one is a fitting for his prosthetic feet in two weeks and he’s excited to get his “new feet”.

Before his second birthday, Arthur contracted meningococcal and was left fighting for his life in intensive care. His feet and part of his right hand had to be amputated and his spleen was killed by the infection. 

But his parents Carly and Nathan Long say he is doing really well after six months in the Royal Children’s Hospital.

“This is the first time in six months we haven’t been getting a weekly general anesthetic - he’s up to 25 plus generals,” Nathan says.

“The last big surgery he had was on his right hand, they did some grafting. They held out a long time with him for his legs and other hand,” Carly adds. “It was a very long stint and he’s obviously still in bandages so he’s not fully healed, he’s not quite there but he’s almost there.”

AN UNKNOWN ILLNESS

Nathan says it was a normal Saturday morning when his son got sick.

“Arthur was a bit off, he was a bit clingy, but nothing major,” he recalls. “And then Saturday afternoon he was still fairly unwell and he had a real high respiratory rate and that triggered me and Carly to get a GP around here. She told us it’s most likely a virusy-flu type thing, take paracetamol, ibuprofen, he should be fine.”

But Arthur kept getting worse and by 9pm the family was at the Launceston General Hospital’s emergency department.

“Not long after we got to the LGH he fell off a cliff health wise,” Nathan says. “When we got to the LGH, they knew it was meningococcal or some seriously septic bacterial infection.”

“We were at the LGH when they noticed the rash come on, which is the telltale sign of meningococcal,” Carly adds. “By the time we left for Melbourne they were pretty certain it was meningococcal and we would get the confirmation over there.”

Carly and Nathan said they did not know much about the disease at the time.

“We still thought everything was going to be fine because they told us he’d got the big hit of antibiotics at the moment when they could tell that’s what it was,” Carly says.

But Arthur was critically sick and getting worse.

“The moment we realised it was really, really bad was when they insisted we call our families at 2am,” Carly recalls.

The couple’s parents were in Hobart and Legana respectively and they thought they would “just ring them in the morning” when “things settle down a bit”.

“And one particular nurse indicated that we might not have that time,” Carly says. “We got really worked up then.

“They said he’s really, really sick and had to get to Melbourne and Nathan was told by the head doctor that he couldn’t guarantee he’d be alive by the time we got there.”

“It is a horrible, horrible disease,” Nathan says. “The worst thing is that by its very nature in its initial stages it appears to be another benign sort of illness then all of a sudden you’re critically ill and on death’s door. It’s incredibly fatal.”

EMERGENCY FLIGHT

Arthur was flown by a large team of medical specialists meaning there was no room for either parent who took a commercial flight.

“It’s quite a big job moving a really sick patient,” Nathan says. “He had two intravenous lines, a range of drugs, and really his life was being supported, he wouldn’t live without that medical intervention, so moving him from LGH into the ambulance and then the ambulance into the plane, back in an ambulance and back in hospital is a pretty major undertaking and time consuming … and if something goes wrong in the air, they can do nothing.”

“I was on my phone looking up everything on our way there and we were both pretty distraught,” Carly recalls. “It was a really hard time for us that first day in Melbourne when his life was on the line and he was going through different surgeries back to back.”

But the flight and transfers went smoothly and Arthur arrived at the RCH, still critically ill, unconscious but alive.

“They were really worried about moving him as he was in a really critical condition then but he remained stable and it was up to the team at the Royal Children’s to buy him time to either beat it or not beat it,” Carly recalls.

THE BAD NEWS ROOM

In Melbourne the pair was sat down in “the bad news room” with a box of tissues and given an update: surgeons need to perform a fasciectomy on Arthur’s legs, where the skin and the muscle sheath is cut to allow blood flow so the muscle’s in Arthur’s legs did not die.

“So it was ‘sign this, sign that’ and five minutes later it was ‘we’re going to have to put him on ECMO’, which is basically life support,” Nathan says.

Extracorporeal membrane oxygenation (ECMO) is a treatment that uses a pump to circulate blood through an artificial lung back into the bloodstream of a very ill baby, providing heart-lung bypass support outside of the body.

“The RCH is one of the best in the world in doing that in paediatrics. It’s a cut through the sternum,” Nathan says. “A tube that goes through and works as your heart outside of your heart,” Carly finishes.

“They said ‘when you go and see him he’s going to be puffy’ and he was, it was pretty horrible but they didn’t tell us that his chest was open … that was pretty scary,” Nathan says.

“When you walked in and were just like, ‘I can’t believe that’s my son in there’.

“And that was when he had the full rash … they kept telling us it was all time and they wouldn’t know what the loss would be,” Carly adds.

“At the time we were like, ‘why can’t you just tell us?’ but now having followed a few other families through this we know the range of loss is very varied,” Nathan says. “There is a lady who has massive internal organ problems but no external problems, there are people who lose all their legs but keep their arms, all sorts of combinations.”

The couple’s parents flew over that same day, Nathan says.

“We had to get our parents over because it was ‘you better come over because we might be saying goodbye’. That was the conversation.”

Arthur spent the next several days comatose in ICU, hooked up to a myriad of machines and tubes keeping him alive.

Carly: “We were devastated that he had to go on the life support.”

Nathan: “I swore at the surgeon.”

Carly: “We asked the lovely lady who managed his case if he was likely to come off it, and she really reluctantly gave him a 50:50 chance of coming off it.”

Nathan: “They were pretty long days because you go into the ICU ward with all the machines, you couldn’t get near him.”

‘ARTHUR NEEDS TO TURN A CORNER’

The first three days were terrible, with Arthur not getting worse but not getting better. Doctors told the family he needed to “turn a corner and start fighting”.

Finally, Arthur had a good night and the doctors thought he was starting to turn that corner and show signs of coming out of the coma.

He was still on dialysis but the doctors removed the ECMO and closed up his chest and he went really well. His liver appeared to be working and he produced urine, which is a big sign his body was improving.

“We weren’t really worrying about his limbs as much yet because all the other stuff had to be sorted first,” Carly says. “They couldn't guarantee that there wasn’t a lot of long-term damage that would need ongoing dialysis.”

Arthur was having moments of waking but was still on a lot of drugs and machines in ICU when his mum was first able to hold him, 10 days after he arrived in Melbourne.

“They said it might be really nice for him to try and lay on you and he sort of indicated that he did want that,” she recalls.

“It was a big ordeal, we had to get two or three people to actually lift him out, sit me on there and have everything on him.

“It was pretty emotional, he was like a dead weight as well, so I had this large baby and I don’t know what to do with him.

“He had moments of being awake, he’d look up at you and you could start to see that he was there but he was still on so many drugs, that was a pretty hard time obviously. It is hard to go back and think of those times.”

OUT OF ICU AND ONTO THE NEXT CHALLENGE

Arthur left intensive care soon after that but his health struggles continued as he was weaned of the the strong painkiller hydromorphone, a process of withdrawal that can be much worse for children.

“Apart from the three or four days when Arthur was critical, which was horrific, the drug withdrawal stage was the second worse part of the experience,” Nathan says. “It was hard to see him like it,” Carly added.

“He had a nasogastric tube and they’d put some food in and he’d vomit it up, so he was vomiting and he was having these drug withdrawals, you couldn’t touch him because he’d scream,” Nathan says.

Despite not having meningococcal meningitis – an infection of the lining around the brain and spinal cord – the parents were worried about brain damage, particularly when Arthur started having unstructured movements, like he was jiggling or dancing.

“Everyone kept telling me to stop doing it, but I was reading every little possible thing,” Carly says. “After reading all the stories, I kept asking them in the early stages at what point would we know that his brain hadn’t been affected.

“I was worried that all the drugs he’d been on had actually given him some type of brain injury because that was our biggest fear that it would have affected his brain and his personality and that he wouldn’t be the same little boy that we had before.”

Thankfully a top neurologist who specialised in movement disorders reassured the family that it was just anxiety causing the involuntary movements.

“They kept reassuring us that our best indication of [brain] damage is what he’s like when he wakes up, so once he woke up and looked at us and started saying ‘mum’ and ‘dad’, we had a bit of reassurance that nothing had happened there.

“Once he started remembering our names and learning new things and saying new words, that was really reassuring for us. His language developed once he woke up and started interacting with us again.”

HAPPY 2nd BIRTHDAY ARTHUR

On May 1, Arthur had his second birthday in hospital.

He was past the worst of the danger but his feet and most of the digits on his right hand had died as menigoccocal restricts blood and oxygen circulation.

In the early stages it looked like Arthur would have his feet and lower leg amputated midway through his shinbone but the orthopaedic surgeon was keen to hold out for as long as possible to get as much length in the leg.

“Arthur keep on healing further and further down and eventually they ended up going through the ankle, which is a win for little kids, or anyone who is growing, because it reduces the chances of follow up surgeries,” Nathan says.

“They could have amputated once we knew he’d lost his feet and got us home a lot quicker but hopefully this will make it so he doesn’t have follow up surgery nearly every year,” Carly adds.

“If you have it higher and you’re growing they have to straighten out the stump nearly every one to two years. So that’s a lot of surgeries, a lot of time off your prosthetic legs, so for him, fingers crossed, that will be it. Obviously he’s still growing so he’ll get new legs every year but he won’t have to have surgery to do that.”

Arthur, who was in bed and unable to move properly for three months, spent a lot of time with the physiotherapist to get him to sit up and hold his own weight.

“Once he started getting better he started getting better really quickly,” Carly says.

‘YOUR FEET GOT SICK AND DIDN’T GET BETTER’

“We were worried about how he would feel when he woke up from the anesthetic and they’d amputated his feet,” Carly says. “So before they did that we started talking about how his feet got sick and they didn’t get better so his feet had to go and he’d be getting new feet. He’s on board with it now.”

“He’s never been frustrated,” Nathan adds.

Carly continues: “I think he knew he was sick and he couldn’t do things. I was quite worried that we were going to take him outside and see kids running, playing, doing things and he’d wouldn’t like it, but he loved it. He loved going and watching kids playing outside. He just did what he could do and once he started what he calls his walking, he just wants to crawl and walk.”

Arthur loves diggers and has picked some fabric with diggers on it that will be used in the construction of his prosthetic legs.

Carly says the type of prosthetic feet will change a lot as he gets older.

“They don’t have a lot of movement in the ankle until about five because it’s not as easy for little kids to learn to balance. Fingers crossed, we’ve been told by the prosthesis team that you might be surprised, he might put them on and just go. Sometimes kids just naturally go.

“It will be great to see him up and walking around again. He’s a little bit limited at the moment so this will be the difference that makes things a little easier.”

So does Arthur feel different from other kids? Has he asked about his feet or hands?

“He just gets on with it,” Carly says. “He’s just always really accepted it. I think it is just his age and it might be maybe when he’s older he’ll question it.

“He understands that they got sick, they didn’t get better and he will get some new feet. We never really spoke to him about his right hand because he’s lost two fingers and a bit of his tip and that much of his little finger and they’re talking about some revision surgery that we might get done on that hand later to separate it a little bit. But for some reason he’s never really asked about his hand. He’s said funny things to us like his hand is beautiful.”

VACCINATION AWARENESS

Part of telling their story is getting the awareness of vaccinations, particularly the different strains of meningococcal, and that parents reading Arthur’s story will investigate.

“It’s vaccine preventable but it was vaccines that we weren’t told about at all,” Carly says. “No one ever mentioned it, so you go through these stages of being a little angry about that. We hadn’t heard that there were different strains of meningococcal so it’s mind boggling that if he’d had that shot this wouldn’t have happened to him.”

Nathan adds: “I couldn’t believe that the same health system that saved Arthur’s life, is the same health system that didn’t tell us … if Arthur had have had one more vaccination he wouldn’t have got sick, one more jab. If the doctor mentioned it, you’d be like, ‘yeah of course, of course’.”

They urged all families to make sure they children are fully immunised.

THE POSITIVES

Nathan says it was a horrific ordeal but, in balance, there has been more positives than negatives.

“He’s incredibly unlucky, Arthur, to contract meningococcal, you’re pretty unlucky, but we got him to hospital in a timely fashion and once he got to hospital, the care he received was perfect, impeccable, it couldn’t have been better. I can’t remember the doctor’s name but he was straight onto it, line in, fluids in, antibiotics in, so that was incredible. Then they flew the doctor up from Hobart and that whole process ran like clockwork, then he’s gone to one of the best paediatric hospitals in the world and received world class care, and for how sick he was, systemically, Arthur’s whole body had failed basically and he was only being kept alive through our wonderful hospital and doctors and nurses, and then his level of amputation was so low and he’s got two good, well not great at the moment but they will be, two really good hands, he’s got no brain damage, he’s got no ongoing internal issues, he lost a spleen but of all the organs, if you’re going to lose one, that’s the best. I think as well. That hospital [RCH] is incredible. Incredible people work there. The immediate care he received here would had to have been world class.

“There’s been hundreds and hundreds of awesome times,” Nathan says. “Like taking him out of his hospital room for the first time. Even Carly having him on her was a massive thing, it was big deal at the time. Carly managed to get him on her lap and we got Carly in a wheelchair out of the room onto a nice window. He hated it too getting him there, but when we got him there he saw the tram and he was so happy and the sun was on him, that was a pretty nice moment.”

THANKS

The family also wants to thank the many people who offered support or thoughts and prayers.

“We were absolutely floored by the support we got in the early days by friends who did fundraisers and people who are still doing it now,” Carly says.

“We are constantly asked by people who have only met Arthur once if we have pages, which we don’t because we’re not dire and don’t feel we need GoFundMe or anything like that but we’re lucky we have the family and friends that we do who went and did it anyway.”

MENINGOCOCCAL FACTS

  • Meningococcal disease is a medical emergency. It can kill within hours, so early diagnosis and treatment is vital. Do not wait for the purple rash to appear as that is a critical stage of the disease.
  • Symptom include fever (which may not go down with medication), nausea or vomiting, lack of energy, tiredness or drowsiness, confusion or disorientation, dizziness, irritability or agitation, a sore throat
  • Be aware there are two different sets of symptoms, depending on whether it takes the form of meningitis or septicaemia (blood poisoning).
  • Meningitis only: backache, stiff or painful neck, sensitivity to light, twitching or convulsions
  • Septicaemia only: fever with cold hands and feet, cold shivers, pain in muscles or joints, pain in chest or abdomen, pale, grey or blotchy skin, rapid breathing, diarrhoea, a rash, which may start off as a spot, scratch mark or blister, as a faint pink rash or as red or purple pinpricks on the skin, then develop into the distinctive purple bruising.
  • Meningococcal is caused by bacteria (not by a virus) and transmitted via mucus. Meningococcal bacteria can live harmlessly in our throat and nose. Around 20 per cent of people will be carrying these bacteria at any one time without ever becoming ill
  • Meningococcal bacteria are not easily spread from person to person and the bacteria do not survive well outside the human body. The bacteria are passed between people in the secretions from the back of the nose and throat. This generally requires close and prolonged contact with a person carrying the bacteria who is usually completely well. 
  • Meningococcal bacteria are not easily spread by sharing drinks, food or cigarettes.
    • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Meningococcal disease can strike babies, children and adults – anywhere, at any time. Those most at risk are:                                                                                                                                     – Babies and children up to the age of 5 years – this group accounts for two thirds of cases (due to their less mature immune system and tendency to put things in their mouth and share food, drink and toys).                                                                                                                   –  Teenagers and young adults from 15 to 24 years – primarily because of the socially interactive lifestyle they lead, which is more likely to involve activities such as kissing and sharing drinks.
  • Source: Meningococcal  Australia.