The heart of the matter

Noah Dawson travelled three hours from his home in Singleton to Sydney, where he was prodded, scanned and weighed in preparation for heart surgery.

Having already had his surgery cancelled earlier that month, it was a relief for the nine year-old and his family to be checked in to The Children’s Hospital at Westmead.

“We thought, they can’t possibly cancel it now,” his mother, Allison Warry, 36, said, “But they did.”

Noah was to undergo open-heart surgery to remove a piece of synthetic tissue, which was preventing proper blood flow to his lungs, but it was cancelled again due to a lack of available beds in the paediatric intensive care unit (PICU).

“You've got all these doctors and nurses waiting to operate on these kids and then at the last minute they’re standing there twiddling their thumbs because there's nowhere to put them,” Ms Warry said.

The cancellation rate remains unacceptable to many involved in the care of these families

Noah’s operation would be cancelled for the third time later that week, meanwhile his condition was worsening to the point where Ms Warry knew her son would eventually need emergency surgery.

He finally underwent the procedure on the fourth scheduled date in August 2018, over two months after the initial booking

But Noah is not alone.

A concerned cardiac practitioner at Westmead Children’s Hospital, who does not wish to be named, has told Central News that 60 per cent of planned cardiac surgeries were cancelled at least once between June and August 2018. This is up from just under half of surgery cancellations during the same period in 2017.

“The main reasons for cancellation are if a more urgent patient arrives, usually a baby born requiring major surgery, and non-availability of an ICU bed,” the cardiac practitioner said.

A Close Observation Unit was opened in June 2018 to relieve some of the pressure and is managed jointly with the Hospital’s PICU.

The unit has six high dependency beds and is part of a $4.95 million State Government funded investment to increase the Hospital’s critical care capacity, according to a spokesperson from the Children’s Hospital at Westmead.

“The Close Observation Unit has helped to significantly reduce the number of rescheduled surgeries with cancellations between June and August reducing by more than 40 per cent compared to the same time last year,” the spokesperson said.

But the cardiac practitioner says this statistic is not specific to cardiac patients, and while the unit has made a difference to cancellation rates overall, more resources are urgently needed to cope with emergencies without needing to cancel scheduled surgeries.

“The cancellation rate remains unacceptable to many involved in the care of these families,” the cardiac practitioner said.

A cardiac nurse at Westmead Children’s Hospital, who also wishes to remain anonymous, has told Central News only four of the six beds in the Close Observation Unit are available, and only on weekdays.

“We've actually got less beds than what we had before,” the cardiac nurse said.

It is not just the PICU beds that are the issue, there is also a problem moving patients out of general wards.

“Someone has to go home from a ward to give a bed to someone who's ready to come out of intensive care so that's what we call exit block,” the cardiac nurse said.

According to data from the Australian Institute of Health and Welfare, the Children’s Hospital at Westmead has had the longest average length of stay out of all children’s hospitals in Australia since 2012.

The 2016/17 average stay at The Children's Hospital at Westmead was 2.5 days, which, according to the cardiac practitioner, suggests more could be done to improve patient flow throughout the Hospital.

Dr Anthony Brown, Executive Director of Health Consumers NSW, says there is a disconnect between decision-makers and families who experience psychological and economic ramifications from cancellations.

“We need to make sure that the people who are involved in rescheduling patients’ surgeries and making those sorts of changes, actually have an opportunity to sit in a room with those patients and their families and understand what it means for them … how people’s lives are turned upside down,” he said.

Ms Warry and her family stayed in Sydney for a total 23 days over two trips, which hurt financially, but also meant she had to keep organising someone to look after their farm.

It also impacted Noah’s siblings who missed school to be in Sydney, including sister, Caitlyn, who was absent for a big portion of year 11.

“They don't take everything into account, they just think, ‘oh well, sorry, better luck next time’,” Ms Warry said.

But worst of all was the emotional toll it took on Noah and his family.

“Noah’s got quite a positive outlook but then as [the surgeries] got cancelled and cancelled and cancelled, you could just see him getting crankier and crankier,” Ms Warry said.

Noah’s brother, Declan, 18, who suffers from anxiety and was not able to be in Sydney, was also impacted by the stress of the cancellations.

“This time for him has been absolutely horrific and I've been backwards and forwards on the phone to him … it’s been madness,” she said.

Ms Warry was understanding about the first two cancellations, the third left her feeling extremely anxious about when and if Noah’s surgery would happen.

“I didn't actually believe he was going into surgery until he was asleep, and then I lost it and I was a bawling mess, so it's been huge,” she said.

While Ms Warry counts herself lucky to have an extremely supportive family, the cardiac nurse says some families are in much more precarious circumstances.

“‘Family centered care’ and all this beautiful language that gets used in children's hospitals is completely misrepresented, because that is not what families actually get,” the cardiac nurse said.

Dr Brown says transparency is key to helping health consumers be informed and advocate to fix problems.

“The health system will never fix itself, without working closely with patients and the community,” he said.

Post-surgery, Ms Warry says Noah is getting back to being the boy he once was, bursting with energy.

But she is still connected to the HeartKids Facebook page and reports seeing messages every few days from parents whose children’s surgeries have been cancelled.

“It's more widespread than [just heart surgery], there's other surgeries that are cancelled too,” she said.

“Something needs to be done about it.”