Tina and Ben Elvins never gave up trying to find answers to help ease the serious asthma endured by their teenage daughter Breah, who passed away suddenly and tragically in February.
For her entire young life, as the family searched for better medical treatments, they felt constantly hampered by the shortage of specialist respiratory services in their rural New South Wales community.
Tina hopes that telling their tragic story will help address the desperate need for specialists and improved asthma care in all rural and remote communities.
It was an ordinary Friday night when Breah went out with friends, only to experience what she believed were minor breathing difficulties. At the insistence of her friends, she went home.
Early the next day she had an asthma flareup and, despite paramedics reporting strong blood oxygen levels, she was taken by ambulance to the nearby Taree hospital.
On route, however, she went into respiratory arrest and at hospital she was intubated immediately.
Over following days, she endured numerous complications, onset by her asthma, including several cardiac arrests. She was airlifted to Prince Alfred Hospital in Sydney, where she also suffered circulation problems and emergency surgery for a blood clot.
Despite the best efforts of medical staff, tragically, she was deemed to be brain dead.
Breah was just 17 and was planning to study nursing. While her life was cut short, her family believes her memory will live on in a very poignant way as several of her organs – her kidneys, liver, pancreas, and her heart – were donated to save the lives of four strangers who were ill and in need.
“The fact that she couldn’t go on to be a nurse, we felt that this was her way of fulfilling that dream of helping people,” Tina said, emotionally.
“And to find out that she did help a child with her heart was really nice to hear that.
“Even though the other recipients were older, and that’s still beautiful, just the fact that one of them was younger than Breah, I just get a lot of relief from that her wishes were fulfilled to a degree – she got to help a child.”
Breah’s death is another reminder of the realities of asthma and the ongoing need for education and awareness among community members, health professionals and our political leaders, and the need for more research investment. It also further reveals the vital need for reliable access to respiratory specialists in regional and remote parts of Australia.
Throughout her life, Breah never received any specialist support because there was none located near the family’s rural hometown.
“It’s frustrating as a parent – you don’t know where to turn to for help,” Tina explained.
“You ask your doctor, and they say, ‘Well, I don’t really know anybody, but if you can find someone that you want me to refer you to, we will give you that referral,’ but it’s the finding someone that’s the problem.
“The pandemic made it harder to access certain support, including the fact that I sat on the computer, and I researched over and over again to try to find a doctor or a facility that specialises in asthma near me, but I couldn’t find anything.”
The challenges of their location added to Breah’s struggles to live a normal life, from a reluctant formal asthma diagnosis as a toddler, an almost-endless list of triggers from pet hair to dust, multiple hospital stays, an almost fatal respiratory collapse as a 14-year-old, and steroid-based medication that left her teeth stained and brittle.
“Breah had virtually every type of trigger for her asthma,” Tina said.
“She had a very difficult life. She spent big chunks of her life in hospital – as did we, with her – and it’s not easy.
“It is likely that we will never truly know all that was at play that morning. We believe it was just the perfect storm, one too many triggers.”
Unfortunately, Tina feels the treatment situation has not improved in decades – she had a good friend who passed away from asthma when they were both in their early teens.
“In 27 years since she’s been gone, there has not been any kind of real change in how we treat asthma and it’s really not acceptable,” she said.
Tina and Ben hope that Breah’s death draws attention to the seriousness of asthma, and the need for medical specialists who understand the health condition, which affects 2.7-million people in Australia – including the desperate need in rural areas.
“I think there needs to be some sort of database or Facebook page that says who would you recommend, or people that can share their experiences,” Tina suggested.
“There really needs to be doctors that specifically focus on asthma, especially when it is such a common condition and it is something that everybody seems to have a different way to treat it, or a way to go about it.
“It’s a big issue, it really is.
“It’s not that these doctors are not great at being doctors; asthma is just not their speciality. Asthma is not where their interests lie.”
Asthma is one of the top five reasons people visit the doctor, which makes it vital that all doctors are skilled in asthma diagnoses and treatments.
Asthma Australia encourages doctors to ensure their knowledge of asthma is up to date, so people with asthma receive treatment that is effective for their specific needs.
Asthma Australia offers a free and accredited online training program –Think GP – which is a high-quality education program for doctors to enhance their asthma skills and knowledge
ThinkGP services for asthma are available here.