Dana McCaffery, who died of whooping cough at 4 weeks.
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It has been six years since whooping cough claimed the life of four-week-old Dana McCaffery. Her parents are angry that lessons learnt from their family's tragic loss were not enough to save other babies, including 32-day-old Riley Hughes, from suffering the same fate.
Here, Toni McCaffery, Dana's mum, writes about her experience.
February 5 is always hard. Every year, we celebrate our daughter's birthday. But she can never blow out her candles. This year, instead of watching her start kindergarten, we wept beside her grave.
This is what whooping cough has done to my family. This is what it has done to 11 other Australian families since 2008. This is what it does to one in 200 babies that catch it.
On March 17 2015, my husband Dave rang me at work.
"Toni, another baby has died," he said softly. "His name is Riley and his mum has just messaged me. It only happened today. He's 32 days old, just like Dana."
We saw the pictures of Riley's beautiful big eyes, peeking out from under his striped cap. So much wonderment. So much to look forward to. So much taken away.
Then I closed my eyes and saw Dana's eyes, wide with fear as she gasped for air, pleading for my help. I heard shrill alarms and desperate shouts of "code blue" as Dana went into cardiac arrest.
Just five days before her death we had been sent home from the doctor for the fourth time.
"It's just a cold," my GP had said.
During the day, Dana seemed fine. But at dusk, the symptoms would descend. She was unsettled and gagged, as if trying to clear her throat. We took turns to sit up with her. Every night she got a little worse.
On my third visit, my GP suggested we test for bronchiolitis and whooping cough. It was the first time anyone had mentioned those words to me.
On March 4 2009 my life changed. Dana had tested positive for whooping cough and my GP ordered us straight to hospital.
We weren't alarmed. We thought the hospital could fix it.
Within 10 minutes of arriving at hospital, Dana had her first uncontrollable coughing fit. Her little body shook violently until the cough became silent, she turned blue and stop breathing. The nurse calmly held oxygen to her face and said, "Yep, classic whooping cough."
There is no cure or treatment for whooping cough. Just oxygen. Dana had up to 10 coughing attacks per hour. Just as she recovered, another would begin.
Gradually, she was taken from us. I couldn't breastfeed her, as it brought on an attack. She was put on a feeding tube. Then, when she couldn't breathe on her own, we were airlifted to Brisbane and Dana was placed on a ventilator.
Our story is common amongst families of whooping cough victims.
We weren't warned about whooping cough. We weren't told that adults needed boosters. We were sent home by our GPs being told it was "just a cold", bronchiolitis, reflux.
For the babies that survive, many are hospitalised for weeks. Others take months. Their exhausted parents are sent home with CPR instructions, and their babies keep having coughing fits and apnoea months on end. Parents don't sleep for fear their baby may stop breathing.
Now we are scarred by what we witnessed. We are passionate about warning other parents.
Just one month before Dana was born, a committee had recommended the introduction of a free whooping cough booster program for new parents and grandparents in NSW. This recommendation sat on a minister's desk.
The day after Dana died, the NSW Government confirmed Dana's death in the same media release that launched the free booster program. Victoria, Queensland, Western Australia and the Australian Capital Territory followed (the Northern Territory already had it in place, and still does).
This helped us cope. We felt some good had come from our tragedy.
But the epidemic got worse.
In 2010, a sweet five-week-old boy died in South Australia. There was no booster program in place, no warnings for the parents. A few days later, the South Australian Government introduced the booster for concession card holders.
In early 2011, beautiful Kristian Reade, just 14 days old, died from whooping cough in Victoria.
A few weeks later, precious Kailis Smith was on life support. His heartbroken parents turned it off on Easter Sunday. He was five weeks old.
Then any progress achieved began to unravel.
Applications to the Pharmaceutical Benefits Advisory Committee (PBAC) to get the adult whooping cough booster on the National Immunisation Program (NIP) were rejected. Despite experts worldwide recommending the vaccine, PBAC wanted further research to justify the $25 cost per vaccine – but had not considered the $20,000 a day it costs to keep one baby alive on a ventilator.
As a result, a Federal awareness campaign was binned and the states didn't want to pay anymore.
In 2012, Victoria and Queensland stopped their programs – and with it, the warnings.
Then Malakai Taylor died in Queensland at 6 weeks of age. His family weren't warned, weren't offered boosters, and little Malakai was sent home several times from the GP.
As Australian states took the booster away, the US, UK, Belgium and New Zealand were introducing the whooping cough booster for pregnant women in their third trimester. This incredible breakthrough meant a mother could pass antibodies to her baby, so they were born with some protection. This cuts the risk of a baby dying by more than 90 per cent.
It is cruel to watch the one thing that could have saved your baby not be implemented properly.
Australia waited until July 2014 for Queensland to introduce the free booster for pregnant women, and the incoming Victoria Government honoured their election promise introducing it in early 2015.
NSW, WA, Tasmanian and the ACT all waited for recommendations from the Australian Technical Advisory Group, due in June this year.
And then beautiful Riley Hughes died.
The next day, WA and NSW announced they would fund the booster. Victoria will also offer the booster free to new fathers.
There is a terrible, reactive cycle here.
We are devastated that our tragedy couldn't prevent the death of Riley and so many other babies. We are exasperated that the very people that have a duty of care to protect us – governments – keep undoing our children's legacy.
We are frustrated that doctors, obstetricians and midwives don't provide consistent advice on the whooping cough booster.
How many pregnant women reading this have been warned about whooping cough? Have you been told you can have a booster in your third trimester? Do you know that every adult and child that comes into contact with your newborn needs to be up to date on their booster?
Governments, please read the stream of comments on the Light for Riley Facebook page that shows the confusion that prevails.
Why is it left up to grieving and exhausted families to make a change?
For the Hughes family, not one medical expert told Catherine to have the whooping cough vaccination in the third trimester.
There are whooping cough outbreaks every few years. Immunity from the vaccine or infection can wane – as quickly as three years. It makes no sense that as soon as the epidemic dissipates, governments withdraw programs.
Please write to your Federal MP and state or territory Health Minister. Or sign this petition.
- Every state and territory government needs to fund the free whooping booster for women and their partners during pregnancy or after birth – until it is added to the Commonwealth National Immunisation Program
- Health departments need to provide clear advice on how often pregnant women and adults need a booster.
- Simple tools need to be developed to prompt busy healthcare workers, such as a simple checkbox on antenatal cards and admission forms.
- Governments and the Australian Medical Association need to work with GPs and health clinics nationally to stock the booster, making it cheaper and easier to access for all adults.
- Doctors need to be vigilant and test for whooping cough. Quicker diagnosis prevents the spread and is vital to save babies lives.
I don't want any more parents to suffer this anguish.
We have lost our babies. We need the voices of all the new and expectant mums to fight for yours.