“You’re grieving and bereft.” The one reality of organ donation families desperately want to change.

Video via Channel 9

August 19, 2016. It was a Friday morning and, in the rural town of Cootamundra 400 kilometres from Sydney, 28-year-old Dougal Hill was in a car accident.

“We worked together on our family farm,” his mother Diana Hill told Mamamia. “He was in a motor vehicle accident and I have to believe the emergency response was in the best interests of his chance of life and survival.”

Dougal was a young man, in otherwise good health, who suffered irreparable brain trauma. “He was a wonderful candidate for organ donation,” Diana said, fighting back tears in the face of such a harsh realisation.

Dougal Hill. Image supplied.

"They air lifted him to a Canberra hospital and, over the course of the weekend, he died," Diana said. "They used such clinical terminology. It was a very medical way to decide a person has lost a life."

By chance, the Wednesday night before the accident The Gruen Transfer was on television and its focus was advertisements for organ donation. Diana had watched the program and describes its timing as "serendipitous".

"My family and I had to make a big decision, very quickly," Diana said. "There was no pressure, but we were told what a good thing we would be doing. How many people we could help. The hospital staff were obviously hopeful we would decide to donate. It was very, very hard."

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The story of Lizzie Mazur and her sister Jennet Hermiston is different. The family had more time and Jennet knew she was going to die. She gave her own consent for organ donation.

"My sister had a genetic condition called Porphyria, which is almost like an allergy to ultra violet light," Lizzie told Mamamia. "When she was exposed to sunlight, toxins flooded her body and her liver had to deal with flushing them out. In her 40s, she suffered acute liver failure, which is a rare complication of the disease."

Jennet had just come back to Australia from the US. Her American husband, along with her two sons, were following her back to Australia.

Jennet Hermiston gave her own consent for organ donation. Image via iStock.

"In January, 2011, she started to become unwell," Lizzie said. "She was admitted to hospital in Melbourne and I was travelling back and forward from Adelaide to see her. She was stable for around five months, but deteriorated after that."

A liver transplant would have saved her life, but none came in time.

"The toxins begun to attack her nervous system, she was breathing through a ventilator and became a paraplegic," Lizzie continued. "She could move her head slightly, but she'd lost feeling in her arms and legs."

Most organ donations, like in Dougal's case, come from "brain death". From people who are young and healthy but have suffered brain trauma. A small number of donations, like Lizzie's sister, come from cardiac death.

"My sister had full brain function, she was very aware of what was happening," Lizzie said. "She knew she'd die and she gave her own consent to donation. We didn't want to decide for her - it was traumatic enough as it was. She knew she was prepared to receive a donated liver."

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Diana and Lizzie are two women from donor families trying to be brave.

They want to more people to understand the realities and complexities of organ donation. They also want the families of future donors to receive more support during the traumatic process.

They are speaking out because both women also want to be involved in the charity event for Herd of Hope, a non-for-profit organisation launched by organ recipient Megan McLoughlin.

The event would see stockmen on horseback cross the Sydney Harbour Bridge with a herd of cattle early on a Sunday morning. "It's about bringing the country to the city," Megan told Mamamia. Each cow is sponsored and the money raised goes to putting more nurses in rural communities to support the families of donors as well as the recipients of organ transplants.

"Stories from organ transplant patients who live in the country suggest that they face more challenges than their city counterparts. They often have to travel long distances for medical appointments which increases their out of pocket expenses," Dr Kate Fennell from the University of South Australia told Mamamia. "However, there has not been any research to show exactly what their social, psychological and practical needs are, so they can be better supported."

Herd of Hope organised the event, setting up a website, advertising a date and calling for people to be involved, believing they had support of the NSW Government. But now the charity is unable to obtain the permit for the Harbour Bridge road closures.

"We had the support of the previous NSW government under Mike Baird. The then-Minister for Roads, Maritime and Freight, Duncan Gay, believed in what we were doing," Megan said. "The current Minister Melinda Pavey is referring to the Roads and Maritime Services (RMS) who will not give us a permit. She could override the RMS, but she will not."

Though Mamamia reached out to Minister Pavey's office, she has declined to comment. The Coordinator General from Transport NSW, in conjunction with RMS, Marg Predergast says she is "working with organisers to find a suitable alternative location".

"Closing the bridge for an extended period would cause significant delays and impact approximately 30,000 vehicles that drive across the bridge on a Sunday at this time and significantly inconvenience the thousands of bus commuters travelling across the bridge," she said. "In an effort to minimise this type of disruption to the community, the bridge is now only closed twice a year for two large hallmark events."

The "disruption", Megan says, is the entire point. "The bridge lane closures might be an inconvenience to some people, but organ donation is causing a lot more inconvenience for many more people around Australia," she said.

"We want to be able to send a nurse to the home of a transplant recipient or the family of someone who's died, just to talk, to have a cup of tea, to sit with the family as they do the gardening or feed the cattle. Just so they know they're not alone."

In 2015 there were 435 deceased organ donors. Between them, a total of 1,483 organs were donated to save or improve the lives of 1,241 people. Last year, 1,447 Australians received life-saving transplants from 503 deceased donors.

Diana has sponsored a cow for Herd of Hope - for whenever it goes ahead - and she says Dougal would love the idea. "He would think it was incredible - a cow going over the harbour bridge in his name," she said. "He would say 'that's awesome, mum'."

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The death of an organ donor is calculated. Everything is planned according to a timetable.

"It's very clinical," Lizzie said. "An organ donation death is very structured because of what they need to organise for the transplants to be successful. We said our goodbyes to Jennet over the course of a weekend, and waited for the process to start."

This is where Diana and Lizzie's stories come together. In the process. A process that is lacking support and desperate for human emotion.

"People assume it's an uplifting feeling when you agree to donate the organs of a loved one - the idea of him 'living on' in someone else - but it's not like that at all. You're grieving and bereft," Diana said. "It's not easy to cope in the hospital and there is very little emotional support: it's almost like 'thank you very much' and on with the process."

Mia Freedman talks to Emma Betts, the 25 year old who is planning her own funeral. Post continues below.

Immediately after the family's consent there is a whirlwind of protocol and signing papers with a counsellor from DonateLife, a national network run by the government's Organ and Tissue Authority.

Everything happens according to a time-frame of organ viability. It is cold and clinical. It is doctor speak flowing over a family that is hurting and in shock.

"I couldn't handle hearing words like 'harvest'," Diana said. "I asked them to refer to it as an 'operation' but had I not spoken up, we wouldn't have gotten that."

"You sign papers about privacy, for consent, and you can be quite specific with what you agree to donate," Diana continued. "There are lots of areas that can be used - different organs as well as skin tissue. There are also medical considerations for what's possible."

As it stands, the families of organ donors receive 'progress reports' two weeks and six weeks after the transplants. It is very rare to be given details beyond that if the transplant has been successful. Families of donors are also offered an hour-long Skype consultation with DonateLife as a form of psychological support.

"It's hard thing for a donor family not to receive recognition," Lizzie said. "You've given this gift and it would be comforting to receive some sort of acknowledgement that the recipient's life is now different or better or they've received a second chance because of someone you loved. We haven't heard anything from the families Jennet helped."

"The communication needs to be different. Donor families should be warned that they might not receive a 'thank you' and recipients should be encouraged to send a 'thank you'," Lizzie continued. Lizzie is also volunteer for DonateLife in Adelaide.

"None of this is spelled out. The recipients are kept separate and there is poor communication and limited support for the families of organ donors. My mother in particular struggled after Jennet's death, she felt like she had 'no one to turn to'."

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In Diana's case, she pushed for more information. She wanted to know some details of the people her son had helped and, after calling and calling DonateLife for more information, she received a letter from a man who is alive because of her son. As with the use of the word "harvest", had she not spoken up she wouldn't have received a thing.

"I was pushing; 'please can we just have a little bit of information'. We did receive one letter and it was such an overwhelming relief," she said. "The letter was an acknowledgement that my son was a real person and now someone else has a life thanks to him. It was just wonderful to receive something."

The current support system is inadequate, Diana says. "Not to fault the individual staff we as family had contact with."

In the hospital, sharing a counsellor or pastoral care worker with countless other patients is not enough when you're talking about your son in terms of organs and tissue.

Afterwards, a phone consultation with a counsellor in a hospital hundreds of kilometres away is also insufficient. You're adjusting to your child becoming a memory and slowly understanding that the knowledge he's helped others will never make it any easier.

"You know that their body is at the end, but knowing that it's going to be broken up is such a hard, hard thing," Diana continued. "For example, Dougal had beautiful blue eyes and, without them, he just would not be himself anymore. His nature - kind and fun-loving and generous - made our decision easier. But I only ever wanted to receive some gratitude. An acknowledgement my son was a was a real person who gave many special gifts. An amazing person who always enriched the lives of others."

 

For more information about Herd of Hope, visit www.herdofhope.com.au

To sign the petition, lobbying Minister Pavey to allow Herd of Hope to go ahead, visit https://www.change.org/

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