‘It’s only because of your son that my daughter’s living’: overcoming the cultural barriers to organ donation | Health
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Uwhen doctors told Milli Udani there was nothing more they could do to treat her seven-year-old son Deyaan’s brain haemorrhage, her “world came crashing down”. Just a week earlier, they had been enjoying a holiday to see family in Mumbai when he started complaining of a headache.
After three doctors declared Deyan brain dead, Udani’s cousin asked her if she had thought about organ donation. The question suddenly brought back a memory from a few weeks ago.
Deyan had come home from the school’s Road and Safety Week wanting to look at Udani’s driver’s license to see if it had the symbol indicating she was registered as an organ donor. He told her that when he grows up, if he has the chance, he will donate his organs.
Udani wanted to honor what she believed to be her son’s last wish. However, her extended family, including her husband, did not want the organs to be donated – partly out of concern that it might affect the reincarnation process they believed in as Jains. She was troubled by the family’s opposition, but her resolve was confirmed by consulting her guru, who told her he was with her.
“After we said yes, the coordinator came to me and was so emotional. And she said, ‘I just want to let you know that the recipient is also seven years old,'” Udani says.
A year later, Udani meets the mother of the baby girl who was saved by her son’s heart.
“It was just heartbreaking to meet this mother. She was so thankful and appreciative. In our culture, bowing and touching someone’s feet is the highest form of respect. She fell on my feet and said my daughter is alive only because of your son.
Cald donors are only 15%
Udani’s family is among the minority who have had the conversation about organ donation. Organ donation rates are disproportionately low in culturally and linguistically diverse (Cald) communities, which account for just 15% of the more than 500 organ donations made in 2023. This is around 10 percentage points below their share of the population.
Research of New South Wales found that Cald families were less likely to be asked to donate a family member’s organs and less likely to consent if asked. Dr Angela Webster, one of the researchers, spoke of the organ donation consent process as a series of barriers to overcome, which can be compounded by a number of intersecting factors behind lower donation rates.
Donation prices are significantly higher in cases like Udani’s, where family members are known to have wanted to be the donor. But people of Chaldean origin are less likely have discussed or made a decision about organ donation.
Cald communities are also less likely to live near the better-resourced inner-city hospitals where most donations are made. This affects both the potential pool of donors and whether the hospital will have specialists and translators available to talk to families about potential donation.
“Royal Prince Alfred in central Sydney has a much higher donation rate than Liverpool Hospital, for example, even though they may appear to be serving a similar number of people,” Dr Webster says.
Certain diseases also disproportionately affect Cald communities, which can be a barrier to donation. Australians of First Nations and those of Pacific Island, Middle Eastern or South Asian heritage have a higher risk of developing diabetes, for example.
There are also language and cultural barriers that can be especially difficult to overcome when the donation is time-sensitive or there are no interpreters around.
Dr Helen Opdam, national medical director of the Australian Organ and Tissue Authority, known as Donate Life, says it is important that all Australians have the right to accurate information about end-of-life choices, including the important decision of whether to donate their organs; however, access to information is not equal, with culturally and linguistically diverse communities often missing out.
Opdam says it’s also important to increase donation in these communities because the immune system must be compatible between donor and recipient to prevent rejection, especially in kidney donations.
“So the more diverse people we can get to be donors from different cultural backgrounds, that will certainly help match similar people with the same genetic background, which affects the immune system and the matching of donor organs and recipients,” says Opdam.
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“Nothing like the freedom of a transplant”
The Government has announced almost $400,000 in grants to support local engagement with culturally and linguistically diverse (Cald) communities on the issue.
As part of the Organ and Tissue Authority’s community awareness grants, 11 community organizations will share funds to provide digital resources, content and organize DonateLife Week events for culturally and linguistically diverse communities, multicultural and faith groups in Australia .
Assistant Minister for Health and Aged Care Ged Kearney says, “Australia is a diverse and multicultural country. These grants will help encourage conversations around organ and tissue donation with Cald communities in their own voices.”
One of the grants went to a free public concert featuring performances by young artists from Cald, a donor-recipient duo, local rapper Little G and a headliner from The Transplants, a rock band fronted by Paulie Stewart, in which all members have undergone organ transplants .
Little G, born Gina Chrysantopoulos, has spent her entire high school career wearing a pager that tells her when a kidney is ready for donation.
Chrysantopoulos was born with urinary reflux, a condition in which the kidneys are damaged by the backflow of urine into the kidneys, but it wasn’t discovered until age 11, when she was taken to a specialist who was struck by her blood pressure of 260 over 160 .
Without a kidney donation, she went through high school spending her lunch in the emergency room on dialysis, a machine that removes waste products from the blood when your kidneys can’t, as well as before school when she got home in the afternoon and before bed.
It’s as Chrysanthopoulos prepares to go out on the night of her 18th birthday that her pager goes off. “The excitement of getting that beep – because I carried it with me every day from year 7 up until I got my transplant. And it just didn’t seem real.”
Chrysantopoulos remembers smiling on the way to the operating room and “mom and dad were there looking at me.”
The transplant came at the perfect time, Chrysanthopoulos says, allowing her to study acting and hip-hop and continue to have a career performing as Little G and dancing both solo and as part of musical groups. Of the 16 years since the kidney transplant, she says, “I never stopped working. I just lived life to the fullest. I did everything that came to hand.”
However, when the transplant began to fail in 2013, Chrysanthopoulos had to return to dialysis and has been limited in her performing career ever since. She has been waiting for a second transplant for more than 10 years.
Instead of four sessions, seven days a week, receiving dialysis through his stomach as he did when he was a child, Chrysanthopoulos now receives the same procedure through his arm (hemodialysis) three days a week, but four to five hours per session.
“They’re exhausting anyway. [There’s] Nothing like transplant freedom I tell you.
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