In the age of advanced genetics, whakapapa is a powerful tool against hereditary illness. Don Rowe talks to Dr Karyn Paringatai, the stomach-less doctor reconnecting whānau to save lives.
Dr Karyn Paringatai has lived eight years without her stomach. After the organ was completely removed in 2010, Paringatai’s oesophagus was sewn to her small intestine, creating an alternate chamber in which to digest food. Since the operation, at least 20 of her whānau have done the same: more stomachs than you could count on your fingers, cut free from the body, preempting biological chance. With an 80% chance of cancer, it’s the common sense thing to do.
The CDH1 gene codes for a protein which mostly plays a role in cell adhesion. As with every gene in the body, we inherit one CDH1 gene from our mother and one from our father. They, in turn, inherited theirs from their own parents, and so on back into the mists of history. This genetic hand-me-down creates an invaluable trail of breadcrumbs for geneticists to identify health risks, like one of the more than 120 mutations that can damage CDH1. But in diasporic communities, where familial connections are threadbare and tenuous, those pathways are lost. Rediscovering one’s whakapapa, then, becomes a matter of life and death – if you can find them.
“During my upbringing I had minimal contact with members of my whānau and limited knowledge of my whakapapa,” says Paringatai. “Then my father passed away in 2007, and in 2009 we did his kawe mate – we took him back home. My aunty called us together and said that there was this genetic mutation in our whakapapa. Dad’s aunty had died of stomach cancer, some of her kids had died of stomach cancer, a couple of her grandkids died of stomach cancer. Because of the size of our whānau, there could have been thousands.”
Halfway through her PhD and working full time, Paringatai visited a geneticist. They had bad news. One of Paringatai’s two CDH1 genes was mutated, a cruel inheritance from her tīpuna on her father’s side. Paringatai was referred to a surgeon immediately. He suggested a total gastrectomy – complete removal of the stomach. She refused.
“I had no time to to process it, nobody to talk to about it, I didn’t even really have a chance to talk to my family,” she says. “I didn’t have time to think about the possibilities of living without a stomach. There was no counselling of any sort offered, and I just thought ‘na I’m not going to do it’.”
But, hidden in six pages of single-space medical jargon, Paringatai’s geneticist had left another gut-punch. The mutation meant her chances of developing stomach cancer had exploded by 700%. It was now almost an inevitability, and one only detectable at the terminal stage.
“The letter was back-to-back full of writing in scientific language I couldn’t understand, and he hadn’t even explained it during the initial consultation,” says Paringatai. “As Māori we’re often quite shy, and doctors and surgeons are speaking in a language that you just don’t understand and you don’t necessarily have the confidence to speak up. Nobody had explained it to me. Then I told a friend and they looked at me like ‘you need to get this surgery, and you need to get it as soon as possible’. I had my stomach out in June.”
During a gastrectomy the surgeon cuts down from the mid-abdomen to the belly button, peeling back skin, muscle and fat to expose the stomach. After carefully separating the arteries to avoid huge bleeding, the surgeon then removes the organ whole, stitching the end of the oesophagus to the lower intestine below. Life changes. Food, so integral to te ao Māori, takes on a new dimension.
New Zealand musician Stan Walker lost 25 members of his whanau to mutations of the CDH1 gene. A year after having his stomach removed he met with Paringatai. His biggest concerns: reflux and mayonnaise.
“Food is a big thing in Māori society, and it’s a legitimate concern worrying if you can eat the same thing,” says Paringatai. “Stan for example said he’s really missing mayo. I told him all is not lost, a year in, mayonnaise is still rich and fatty – eventually you can eat everything. But it did make me think”
Paringatai was the first person in Dunedin to have a full gastrectomy because of this mutation, she says. Along with a lack of information or counselling, Paringatai believes patients like her are suffering from a system that treats each step in the process independently and at odds with a worldview informed by tikanga Māori. Geneticists detect the problem, surgeons carry out the operation, and then you’re sent home to learn to live sans-stomach. It’s intimidating and incredibly isolating.
“Tikanga is hard to define and constantly evolving and changing, but there are certain cultural values that underpin it: things like manaaki, aroha, and taha wairua – making sure that people are holistically cared for in all of this. At the base of all that is your whakapapa”
This year Paringatai was awarded $823,000 of Marsden funding to conduct research at the intersection of whakapapa and genetics. Titled ‘E kore au e ngaro! The enduring legacy of whakapapa’, Paringatai’s work aims to emphasise the potentially life-saving benefits of reconnecting with your whānau and, through them, your tīpuna.
Paringatai will be joined in her research by Dr Parry Guilford, Director of Te Aho Matatu – The Centre for Translational Cancer Research at the University of Otago. Dr Guilford discovered the CDH1 gene mutation in Stan Walker’s family in the 1990s, and has since diagnosed a further 17 families. Last year he won the Distinguished Research Medal, the University of Otago’s highest distinction.
“The grant is amazing because the money means we can bring Dr Guilford on board,” says Paringatai. Beyond her specific circumstances, Paringatai believes an empowered populace leads to improved health outcomes across the board.
“Through this research I want to show the importance of whakapapa not just as genealogical charts, lists of names and family trees, but as all of the stories that go with it and all of the knowledge of the individuals in your whakapapa – it’s not just a list, it’s history,”
By navigating these worlds, and examining areas like genetics through different epistemological lenses, Paringatai hopes also to foster whānau connections and create a self-perpetuating cycle of increased hauora. Medicine, which has at times run contrary to traditional Māori concepts of wellness, can be harnessed as a medium with which to uplift communities.
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For carriers of the CDH1 mutation, knowing who you are is more than just a nice feeling, it’s a matter of survival. But for Paringatai, a grounding in whakapapa is not only life-giving, but life-affirming too.
“What having that mutation has allowed members of my extended whānau to do is to reconnect with each other,” she says. “And so I don’t see the gene as a death sentence as some people might.”
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