Why we must never forget Dana McCaffery
Ten years ago, Toni and David McCaffery lost their four-week-old baby Dana to whooping cough. And as they remember their little girl, they continue to fight to ensure this never happens to another family.
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On a hot, cloudy day earlier this month, Toni and David McCaffery visited the cemetery their daughter Dana is buried in.
Together with their other three children (James, 16, Aisling, 14, and Sarah, eight), they brought a cake to Dana’s graveside and sang her a rendition of ‘Happy Birthday’.
They sat for a while and talked with Dana. Then they went out for pizza.
For the past 10 years, on the fifth day of February, the McCaffery family has been lovingly following this family tradition.
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Dana was barely a month old when she died on March 9, 2009, from whooping cough (also known as pertussis), a contagious disease best prevented through vaccination.
Although the family was vaccinated (and little Dana would also have been immunised when she became of age at two months), what Toni and David had not realised at the time of Dana’s birth was the extremely low rate of childhood vaccination in their area of the Northern Rivers on the NSW North Coast.
They did not know and, astoundingly, were not warned by a single health professional of the whooping cough epidemic running rife in the region.
They were not told that adults, too, need whooping cough boosters because immunity wanes after a decade, meaning that around 90 per cent of adults no longer have adequate protection against this deadly disease.
“It’s devastating to lose a child, but when you lose a child and then you find out how simple it could have been to protect them, but no-one told you, it’s heartbreaking,” Toni tells Stellar, residual anger in her voice.
“If someone had just warned me [whooping cough] was around, things could have been so different.”
“This is a beautiful place to live,” David says of their regional home. “But we didn’t understand it was one of the most dangerous spots in the country. We found out in the worst possible way.”
The first three weeks of Dana’s life were spent in blissful happiness. But when the newborn showed signs of being unsettled at night, it was a mother’s instinct that informed Toni something was wrong.
“Whooping cough is deceiving at first. Dana wasn’t coughing,” says Toni. “When we got the diagnosis — and it took me going to a doctor four times to get that — I was relieved because I thought, ‘Great, we can go to the hospital and they can fix her.’”
Dana had her first coughing fit as soon as they arrived at the hospital. She coughed until she turned blue, passed out and stopped breathing in her mother’s arms.
“The nurse calmly took her from me and put oxygen on her, and said ‘Yep, classic whooping cough.’ We were mortified at how violent it was,” recalls Toni.
The next five days were the stuff of nightmares. The only thing the medical staff could do was give Dana oxygen whenever she had a coughing fit, which she would have every five to 10 minutes.
The horror Toni and David witnessed in those few days, as their little girl suffered, will never leave them.
“She was put in a perspex oxygen box,” says Toni. “That’s the first time I saw her smile. Through an oxygen box.”
Cruelly, just when Dana looked to be getting better, she developed pneumonia and was airlifted to Brisbane’s Mater Hospital.
Two days later, she had an aggressive reaction to the toxins in her body, and after 10 hours of blood transfusions and desperate attempts to save her, Dana went into cardiac arrest and died. She was just 32 days old.
“When we held her, after everybody, being handed our tiny daughter after she was unhooked from the ventilator... we got to hold our daughter again,” says Toni, her voice wobbling with the pain only a parent who has lost a child can ever fully understand; a grief undiminished with time.
The family will likely never know exactly how Dana contracted the disease. The would-haves and could-haves continue to haunt Toni.
“I wrote down every possible symptom she had, where we’d been, just trying to understand. And through that process, I realised there were so many failures, so many little things that added up to big things that needed to change.”
In the intervening years, Toni and David have joined the chorus of other families who have lost children due to vaccination misinformation, and have become vocal advocates for immunisation. Toni has spent years lobbying the federal government for a national vaccination program.
“My wife has been phenomenal,” says David. “The amount of time and effort she’s put in, talking to media, politicians, health departments... The disease picked on the wrong person, in terms of my wife.”
Given the sensitivities around the subject of vaccination, the McCafferys have often faced abuse from anti-vaccination proponents.
“We’ve always tried to be respectful,” Toni tells Stellar. “It’s hard enough losing a child. Having to deal with that level of harassment and vilification is a whole other level.”
In an open letter just after Dana died, the McCafferys wrote that they felt they had failed their child. Given all they have worked to achieve in her name, do they still feel that way?
“Oh,” says Toni. She begins to cry. “No, it’s... we can never get her back. That’s a very, very difficult thing for anyone. This horrible disease murdered our child. We can never get over that. But we promised her we would do everything we could to make sure that it wouldn’t happen to someone else.”
Last year, the federal government announced a $40 million national immunisation program, with expectant mothers being given guaranteed access to a free whooping cough vaccine.
“That was the moment where Dave and I let out the grief we went through. We feel now we can move on because we’ve honoured our promise to our daughter.”
Had Dana lived, she would now be 10 years old. Toni often wonders what her daughter would have looked like, been like. “Whenever I look at her picture, I know she has the same set of eyes as her brother and her grandmother. She had a little ear pit in her left ear; her older sister’s got two.”
David, a teacher, knows there is a gap missing in the classroom where Dana should be. “I’m in classrooms with kids her age. I look at their little faces. Her little face is what’s missing. We know that.”
Still, Dana remains a part of their lives every single day. The other children talk about her all the time.
“She will always, always be my third child,” says Toni. “One of the hardest questions to get asked when you lose a child is, ‘How many kids do you have?’ Sometimes I can answer it, and sometimes I just tap dance around it.
“But I always say four — I have four children.”
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Originally published as Why we must never forget Dana McCaffery