Grieving parents speak out against anti-vaccination extremists

On March 9, 2009, four-week-old Dana McCaffery's heart stopped after whooping cough left her tiny lungs unable to breathe. Her mother Toni could not watch as medical staff unhooked her daughter from the hopelessly inadequate life support system, but her husband Dave did, and crumpled with grief.

Toni McCaffery

ON March 9, 2009, four-week-old Dana McCaffery's heart stopped after whooping cough left her tiny lungs unable to breathe.

Her mother Toni could not watch as medical staff unhooked her daughter from the hopelessly inadequate life support system, but her husband Dave did, and crumpled with grief.

"Dave was screaming," says Toni.

"I told him to be quiet. I just wanted to soothe my child."

As Toni held her tiny baby, she couldn't comprehend the loss, or how they would survive the sorrow.

Little did they know then that Dana's death from whooping cough, and the media coverage that followed, came to represent a very inconvenient truth to the anti-vaccination lobby - and thus began an extraordinary campaign against this grieving family.

The McCafferys are today breaking their silence on the cyber bullying,the anonymous letters and the cruelty of some members of the anti-vaccination movement.

The couple has been accused of being on the payroll of drug companies; they have had their daughter's death questioned and mocked; they have even been told to "harden the f . . . up" by an opponent of vaccination.

"The venom directed at us has just been torture and it's been frightening, abhorrent and insensitive in the extreme," says Toni, who has not had the strength to talk about this until now.

The invasion of the McCafferys' grief started the day before they buried their baby girl. Meryl Dorey, who heads up the Bangalow-based Australian Vaccination Network, rang the head of the North Coast Area Health Service, Paul Corben, to demand Dana McCaffery's medical reports.

She wanted proof that Dana actually died of whooping cough. Dorey has no medical training, but she wrote this on a blog defending her actions.

"When this little girl's death was announced, the media were reporting several things that made me question that this baby had actually died of whooping cough. I contacted the head of the public health unit and asked if this case of pertussis (whooping cough) had been laboratory diagnosed."

She was told it had been a quick test but pushed further, wanting to know if there was a bacterial culture.

She was denied the information.

"To my mind, while an entire community of conscientious objectors were being victimised by the government and the media and being blamed for the death of a child who was too young to be vaccinated, I had every right to ask for this information," Dorey wrote.

Toni disagreed: "They were just tearing apart everything we had just witnessed and lived through..

"It just made me feel sick to the stomach, but it was just the beginning."

On May 3, 2009, Dorey wrote that Dana caught whooping cough in the hospital as a newborn: "The only thing that is fairly certain, according to Dana's doctor, is that she probably did come into contact with pertussis in the hospital - not after she went home."

The McCafferys began to receive anonymous letters to their home address, including AVN pamphlets, telling them they should have just stayed at home and breastfed the baby.

It was antibiotics that killed her child, they were told, and if she'd simply had some intravenous vitamin C, Dana would still be alive.

"We were getting so many letters of support and then you get one like that and my reaction was to rip them to shreds," David says. "I don't understand how people can be so cruel, but I believe the intent was to shut us up."

On September 2, 2009, the McCafferys appeared on the ABC's 7.30 Report, talking about the whooping cough epidemic and vaccination.

Dorey also appeared in the same program but, after the episode aired, Dorey, unhappy with the editing, sent an e-letter to her subscribers asking them to complain to the ABC.

She even told them the website to visit and what to say. The 7.30 program has confirmed it was inundated.

The McCafferys set up a website and Facebook account, both in honour of Dana and as an educational tool on the subject of vaccination.

On December 8, 2009, Dorey posted her own writings on Dana's site, questioning vaccines.

In another email to Dana's website, an Andrew McDonald wrote: "Dear Dana's family, I am so sorry to read of your daughter's passing. It must be tragic to lose a daughter and I wish you all sympathy and trust that God delivers unto you. I find it amazing that some people firmly believe that God was not perfect. Apparently, according to these people, God forgot to add the heavy toxic metals, pig cells, chicken cells, etc that are found in vaccines.

"I choose this subject because your whole website seems to be pointing the finger at vaccines, or lack thereof, for your daughter's tragic death. How can you be so sure ? Do you have so much faith in the financially pressured drug companies to outstrip God that you do not doubt them at all? Have you done any research into vaccines and seen the reason why so many people will not tolerate injecting their families with toxic muck? Do you have justifiable logic to discredit all their fears?

"I am sorry, but I believe Dana passed away because of different reasons than you claim.

"All the same, please accept my sympathy for your tragic loss."

There is also an Andrew McDonald who is a regular on AVN forums.

On another blog belonging to The Skeptics, another anti-vaccinator wrote:

"Did Dana receive the vitamin K injection? Did Dana have any reactions to these injections? Was Dana on any medication, etc? These questions need to be asked, because these may be the reasons why her immune system was depleted enough for her to contract pertusis (sic) in the first place."

Toni McCaffery responded to this post on June 17, 2009, because she felt again her daughter's truth was being trampled. A person known as Bernice London responded with vitriolic gusto.

"Toni, you seem quite indignant that anyone is daring to question your beliefs in the religion of vaccinology," she wrote. "I would have thought that it is incumbent on you or anyone else who is seeking a very costly heightened 'awareness campaign' about the dangers of pertussis to provide evidence of vaccination efficacy and safety. In other words put up or shut up!"

A Bernice London is also a regular on the AVN blogs.

"I just felt hatred," says Toni. "These people were completely disrespectful to Dana, they said we were lying and making it up (that she died of whooping cough). On top of grappling with the loss of a child we thought we were doing the right thing to warn people, isn't that a good community service? But I couldn't understand why people would hate me."

One blogger breathtakingly accused the McCafferys of picking on Dorey: "Grieving parents. Yes grieving parents involved in an extremely nasty and hateful campaign against Meryl Dorey and the AVN."

Dana's death did indeed raise awareness of the importance of whooping cough boosters, and Dana's story is on the back of pamphlets given to new mothers. This has led to accusations they are on the payroll of "big pharma" and part of a conspiracy to scare people into vaccinating.

Judith Wilyman, an anti-vaccination campaigner and PhD student at Wollongong University, sent a letter to the Human Rights Commission and Dorey published it on her site.

Again it tore at the McCafferys' hearts.

"These programs have been promoting the whooping cough vaccine on anecdotal evidence (in particular, Dana McCaffery's death) and the mantra of 'seeing sick babies gasping for air'," Wilyman wrote.

Wilyman also suggested the McCafferys cashed in on their daughter's death because they were awarded a $1000 prize from The Skeptics, a group that continually questions the AVN. They donated the money to Westmead Hospital.

Agenda approached Wilyman for comment but the University of Wollongong media unit relayed the message that she "did not wish to speak to the media at this time".

David McCaffery even pleaded with Dorey to ask AVN supporters to stop, saying their campaign was distressing the family.

Eventually, the McCafferys made a formal complaint to the Health Care Complaints Commission about the AVN spreading misinformation.

The HCCC found against the AVN and issued a public warning about the group in July 2010. The AVN lost their charitable status as a result, but won it back after a Supreme Court challenge ruled the HCCC did not have the jurisdiction. This loophole has now been closed, giving the HCCC the power to re-examine the complaints.

The Sunday Telegraph sought comment from Dorey on the issues and allegations raised in this article.

She declined to respond, but said she would comment once the story had been published.

In 2009, Terrigal father of four Chris Kokegei turned off his seven-year-old son Michael's life support system three days after the little boy caught chicken pox. "It's just pain, the pain, it is so awful," he says.

Like the McCafferys, he went public to raise awareness about vaccination. In 2010 he did three television interviews and he left his phone number with each network for other parents to get in touch.

Soon after, he received a call from a woman who claimed she was from the AVN. He does not recall her name.

She accused him of doing the community a disservice, saying he should not be promoting immunisation.

"Then she went on saying my son was obviously weak and the weakest of the herd are not meant to survive, I should just get over it," he says.

Kokegei was gobsmacked.

"I didn't think someone could be that cold, to belittle what happened to my son in such a heartless way," he says. "I just hung up. Two days later she rang again. She just kicked me in the guts."

Cecily Johnson's daughter Laine died a slow and agonising death. She contracted measles as a 10-month-old, just weeks before her scheduled immunisation, but survived.

But when she was seven years old, the deadly measles sidekick that had been lying in wait, subacute sclerosing panencephalitis (SSPE), began its fatal attack. Within two weeks she was blind, and then lost ability to walk and talk.

She died at age 12 in 1995.

Like the McCafferys and the Kokegeis, Cecily wanted to warn other families about the horrors of vaccine-preventable diseases. She spoke to Ray Martin and within weeks an anti-vaccination book, Behavioural Problems in Children: the Link to Vaccination, was delivered to her in-laws' address in Western Australia.

It was signed by the author, anti-vaccination campaigner Vera Schribner. "I sent it back to her. I was furious," Cecily says.

When she moved to the NSW Far North Coast she attended information evenings on vaccination run by the AVN. She again showed photos of her daughter with the hope of convincing them of the truth.

Dorey threatened her with an AVO.

Then pamphlets from the AVN ended up in her letterbox.

"I don't know how they got my home address but I rang them and swore at them and abused them. They were trying to convince me my child didn't die of SSPE. It was so painful and insulting and it diminishes the agony Laine went through," Cecily says.

The AVN's belief is that the scientific community, the world's western doctors, successive governments, journalists and the media are colluding in a joint plot to vaccinate children to make money.

Anyone who criticises or questions the AVN invites a rash of abuse. Opposition health spokesman Andrew McDonald (not the same man who commented on blogs) copped this spray after he criticised the AVN in parliament last year: "May you and yours rot in hell along with the big pharma pricks you support. Don't even cross my path. May you choke on your own bulls... and die."

McDonald ignored that email but called in police for this one: "What I wish for you is to have every flu injection along with every other toxic immunisation available and enjoy the results. Give your kids the same shots, just in case it runs in the family. Good riddance to bad rubbish."

The author, who called himself 'pygmy', was tracked down by police and warned.

The AVN faces a hearing in June in front of the Administrative Decisions Tribunal. Fair Trading has directed the association to change its name because it regards it to be misleading, a decision that is being challenged by the AVN.

The McCafferys will make a statement to the tribunal which includes the litany of harassment.

At one point, Toni says someone wrote that Dana was "just one baby" who died. That one baby, Toni says, is the reason they will continue to raise awareness about immunisation.

"The greatest heartbreak for us is we were never warned and never given the chance to protect Dana, we want to fix this and that shows Dana and others how much we loved and wanted her here," she says.