The human faces of the swine flu toll

BY TONY WALL AND LEIGH VAN DER STOEP

It started with an itch in Jo Peck's throat and ended six days later with her cradling the lifeless body of her baby daughter.

It had taken her and husband Lou three years to conceive Amelie, their only child, and now Peck was confronted with the horrific reality that she had passed the swine flu virus to her little girl.

Amelie had been born 10 weeks premature, 14 months before, weighing just 660g, and had survived a fusillade of complications blood transfusions, eye surgery, life-threatening infections. But she was a fighter, and although she was still on oxygen, the Pecks, of Palmerston North, were hopeful that she was through the worst of it.

But they hadn't counted on a highly contagious new strain of flu hitting the country with a vengeance.

Influenza A-H1N1, commonly known as swine flu, was brought in from Mexico by a group of Auckland schoolchildren in late April, and although it was contained for the first few weeks, by July it was being transmitted in the community. And people were beginning to die from its complications.

Peck, a part-time nurse, first began showing symptoms around the second week of July.

"I don't know how I got it," she says. "The way I was sick was really weird. There was this itch in my throat. I was trying to cough it out. I hopped into bed and, of course, Amelie slept in our bedroom because she was still on oxygen her lungs were vulnerable.

"I said, `I'm not sick, I'm not sick, I've just got something stuck in my throat'. And then on the Tuesday morning I couldn't get out of bed. I had a really high fever and I was sweating."

Ironically Jo and Lou, a primary school teacher, had always been "paranoid" about germs. Amelie wasn't allowed near crowds and visitors to their home were asked to use antibacterial wipes and hand sanitizers.

Peck left the family home on Tuesday morning to stay at her mother's, but it was too late, the virus had been transmitted to Amelie.

By the time she recovered and returned home a couple of days later, Amelie had fever and diarrhoea. She took her to a GP and was given electrolytes and sent home. Peck stayed up all night with Amelie and the next day she was admitted to hospital. The same day Amelie had been due to be weaned off her oxygen.

Amelie deteriorated throughout the day, with a team of doctors working frantically to save her life. She passed away on the Saturday morning of July 18.

"A doctor came out. He gave us that horrible look and said, `I think you need to come and be with your daughter'. I remember saying really loud, `this is scary, I'm really scared.

"We sang to her, `Amelie... Amelie... Amelie...' But her heart was going."

Peck removed the tubes attached to Amelie so she could hold her.

"I had one Islander nurse. And the Islanders have a spiritual and emotional way. She told me, `Amelie just wanted to be picked up and held in your arms so she could go'. And I knew for those three hours she was so scared, she wanted... she wanted to go in the natural way in my arms."

Lou is feeling tormented by Amelie's death and Jo is beating herself up. "I torture myself," she says. "You're always going through it in your head what could you have done differently?"

The sad fact is that Amelie's health problems made her a prime target for swine flu, which attacks the respiratory tract and damages the lungs.

It was killing everyone from a 140kg Mongrel Mob member to young men and women who otherwise appeared healthy. What chance did a toddler have?

The swine flu death toll stands at 17, but as many as 20 other deaths are being investigated by the coroner.

Although most people who contracted H1N1 suffered only minor symptoms, some described it as the worst thing they had ever experienced. The speed with which it strikes is frightening. Journalist Olivia Tully, who has a bronchial condition, was out to dinner and feeling fine at 9pm, and by midnight was in hospital.

"I'd never felt that sick before, and I've had pneumonia three times growing up. This is a different level," she says.

There is a lot about swine flu that puzzles experts. It is highly contagious and once the Ministry of Health stopped trying to contain it around mid-June, it quickly spread throughout the country, becoming the predominant flu strain, making up 80 percent of cases. Yet it is not highly pathogenic, or disease-causing, lacking the genetic markers that made the 1918 Spanish flu and bird flu, H5N1, so lethal.

That said, record numbers of people reported to their GP with flu symptoms, peaking at more than 1109 consultations in one week in July, which is three times more than usual. Intensive care units (ICUs) came close to overflowing, almost reaching the national capacity of 200. At the height of the pandemic in July, St John ambulance experienced its highest ever volume of 111 calls, almost 22,000, with up to double the usual number of calls coming in some days.

Confusingly, the virus proved deadly in a small number of cases where the victim was healthy.

"It's quite a different beast, we need to study the virus more," says Dr Sue Huang, the head of the National Influenza Centre. "Perhaps there is some unknown genetic marker... which is associated with the highly transmissible nature of the virus, and why it can cause fatal outcomes in risk groups."

The "risk groups" she refers to include people with diabetes, obesity, chronic respiratory conditions and pregnant women. "What you might see in a family is that one family member died, another didn't even get an infection. That in many ways is to do with the host, not the virus. We are still trying to identify what exactly is the risk factor for getting severe disease."

Huang says H1N1 has hit young people hardest.

"We know that people over 65 sometimes have some immunity because they were born before 1957, those people have been exposed to a virus very similar to this and maybe have some residual immunity.

"You have to look at young people's behaviour, in school, their hygienic level is not as good as adults." Most years, up to 350 people, mostly elderly, die of seasonal flu-related illnesses, but in one of the few positive spin-offs of swine flu, that didn't happen this year.

"The pandemic pushed the seasonal flu out as a consequence we had far fewer deaths from influenza this year," says Steve Brazier, the ministry's director of emergency management.

Brazier says H1N1 behaved unpredictably, "popping up" in communities instead of moving down the country in waves. Outbreaks in areas such as South Auckland were not as bad as feared.

Quick action to secure the country's borders and contain the virus when it first arrived bought precious time to learn from it and update the response plan, says Dr Mark Jacobs, the national director of public health.

"There were very early reports that it was quite a severe illness and we didn't know a lot more than that really. We knew we had plans in place, but the real question was could this be the start of a new pandemic and do we take it seriously or do we wait and see? I think we made the right call, ultimately we bought ourselves six to seven weeks."

Jacobs says aspects of the response could have been improved, "but I think overall we held up very well. I think some of the planning now is how best to use the people with individual skills, like whether you're making the best of the medical officers of health.

"I don't think there's anything particularly significant [we'd do differently]. I think the communication side of things went really well."

Communicaton from health authorities is not something Rosemary Dempsey would know about. On Tuesday, July 14, her 21-year-old son, Joshua Small-Dempsey, had a minor cold but was otherwise "on top of the world". By Thursday morning he was dead. Ambulance, fire service and police staff went through her Tahuna home, in rural Waikato, wearing gloves and masks.

"I found it all a bit confusing. We heard nothing for a week. Then the coroner called to say Josh had tested positive for swine flu. I thought `OK, so what do I do?' I rang my GP, who was away. I rang the 0800 number they are advertising on TV. I said `what do I do, my son's died of it, I can't get hold of my GP'. She said, `oh well, if you're really worried about it you could go to a doctor and get tested'.

"What I couldn't understand was why there wasn't somebody knocking on my door, or saying `don't go anywhere'."

Health authorities had long since given up their containment policy by then, leaving Dempsey and her surviving children feeling uninformed and alone. They were never tested, but did not develop any symptoms.

It is suspected Josh, an aspiring radio DJ, picked up swine flu when he went into Hamilton on the Tuesday night to play the Magic card game. By the next day, he was pale and droopy-eyed.

He was supposed to go to the movies in Hamilton with his mum and sister on Wednesday night, but said: "With this swine flu around, I don't think they'll let me in with this cough."

When Dempsey arrived home from the movies, Josh had gone to bed and was snoring. A dairy farm worker, she got up at 7 the next morning and around that time, Josh's little sister saw him walking to the toilet.

Dempsey came home at 9am to an awful, eerie silence. "He was lying on his side like he'd normally lie. He had the blankets tucked up quite neatly around him. I flicked his foot and said `Josh'. There was nothing. I nudged him again and his arm came down and then I saw his face, it was blue."

While Josh had no health complaints, a clue to his death might lie in his size. He was overweight, his mother says.

She "pooh-poohed" swine flu when she first heard of it, not taking it too seriously, but was stunned by how quickly it claimed her boy. The stated time of death was 7.30-8am, and the interim cause of death was pulmonary oedema, a build-up of fluid on the lungs.

"How can it hit a big boy like that, of that age? How can someone get up and go to the toilet at 7 o'clock and by 8 o'clock be dead?"

Like Jo Peck, Dempsey is beating herself up, and has had to quit her job.

"I should have been at home but I wasn't. I just feel at least if I'd made him go to the doctor, even if the doctor had sent him home, you could have put some blame somewhere. But because I didn't, that blame is put here."

She said there was confusion on how to deal with suspected swine flu.

"A lot of people became disheartened when GPs stopped seeing them, because if your doctors are saying `stay home', what more can you do? Leave it till you're critical? And then how long do you leave it?

"But if you get it and it's going to kill you, it's going to kill you. There's actually nothing anyone can do to save you. That's real scary. I remember thinking `gee, there's a lot of people who don't realise just how deadly this thing is'."

Damian Lavelle agrees. His 27-year-old brother Stephen died in Auckland Hospital on July 24, after being admitted to hospital in his home town of Invercargill six days earlier. He tested positive for swine flu, but his family is waiting on confirmation of the cause of death from the coroner.

"I feel if this was just the swine flu that killed Stephen, then really there's a lot to be worried about," Damian says. Tests suggest Stephen also had a blood infection, and Damian says his gut feeling is that also contributed to his brother's death. "I suppose the concerning thing for Stephen was, overall, he was healthy. He had his bugs, we all get the flu, but he wasn't overweight, he didn't have asthma."

Particularly frightening in the Lavelle case is the fact that Stephen had gone to his GP. "He'd had the flu, he'd been to the doctor a few days before he actually went into hospital. At the time the doctor thought it was just the flu, he took a blood test and gave him medication. He wasn't given Tamiflu. Unfortunately he hasn't gotten any better. He's deteriorated to the point he's gone into hospital and hasn't come out."

Stephen was put on a machine that pumped blood out of his body through a tube in his leg and back in through his neck, bypassing his lungs.

"It was quite gruesome to see him on it. One of the downfalls of the machine they had him on was he could get bleeding on the brain, and that's what killed him in the end."

Damian said he felt there was not enough information on what to do.

"I put myself in Stephen's position. I'm the type of person that wouldn't have even gone to the doctor. I would have been stubborn, like 90% of people. I would have gone, `oh, it's just a bug, I'll stay at home, have some Panadol, rest up and I'll come right'. He's done the right thing, he's gone to the doctor and he's gone away and thought, `I'll get better'.

"That's the catch-22, if you do go to the hospital or the doctor, they're sort of being blase about it. They tell you you've got the flu, go home and rest up. The health professionals were a little bit naive about it."

To stay home, or see a doctor it was one of the vexing questions of the swine flu pandemic. The official message, relayed via media, was to call Healthline for advice and not to just turn up at a doctor's surgery or hospital unless your condition was deteriorating or you had other health problems. Most people took that advice on board, says Jacobs.

"The big issue is whether anyone with a flu-like illness during a pandemic should go to the GP or not. If that was not the advice, our GPs would be swamped."

And, he says, when the expected second wave of swine flu hits the country, there will be no containment phase this time, authorities will move straight to managing the virus in the community. However, there might be a greater emphasis on testing patients for H1N1, something which took a backseat during the July peak because the health services and laboratories were too stretched.

Brazier, the ministry's director of emergency management, says only 2% of the country's reserves of Tamiflu were used and the country is well placed to deal with the second wave. Next time around, the same messages about staying home will be reinforced, he says, and people will be encouraged to call the 0800611116 Healthline for more information.

Jacobs says the ministry is conducting a national survey to determine how many people have been exposed to H1N1 and may have built up immunity. The more people who got it this time, the less chance of a catastrophic second wave.

"The fundamental information we don't know is what proportion of the population have had the infection. We have a vague idea in the order of around 10-15%. If that is the case, it makes the chance of another wave being at least the same as this time, quite significant."

As the northern hemisphere heads into winter and prepares for a huge wave of infections, other countries have looked to New Zealand to learn how to effectively deal with the swine flu pandemic within their borders, Jacobs says. He has been called on by the World Health Organisation (WHO) to present his experience.

No one knows when the second wave will hit here. Some predict it will happen this summer as northern hemisphere visitors arrive, others think not until next autumn.

Health Minister Tony Ryall says more needs to be done next time to give frontline staff a break, and better planning is needed to ease pressure on ICUs. "I don't think we fully understood the impact swine flu would have on the ICUs' capacity. In the first couple of weeks [after community transmission] we saw it having an impact. So we need to look at how could we address that."

St John ambulance is also confronting how it dealt with the fallout from swine flu. It introduced a new protocol during winter, allowing dispatchers to rate each emergency call as priority one, two, or three. People who reported flu symptoms were given a priority three response as it was usually not life-threatening, but concerns were raised when four patients died after they were incorrectly given a lower priority. An internal investigation found insufficient training of call staff was a key factor in the delays.

The WHO said last week that the swine flu virus had apparently not yet mutated. Vaccines have been developed and are expected to be incorporated into New Zealand's seasonal flu vaccines for next winter.

But Huang, of the National Influenza Centre, says we cannot rest easy.

"We're not out of the woods yet, because the virus potentially can go through major change and that change may bring some of the pathogenic features back to this virus. That's the worry."

- © Fairfax NZ News