The mystery that led this family to get their stomachs removed

Summary

Short Wave Podcast Summary

Episode: The mystery that led this family to get their stomachs removed
Host: Emily Kwong (NPR)
Guest: Sarah Zhang (The Atlantic staff writer)
Date: April 27, 2026
Theme: How a genetic mystery in a Māori family led to a groundbreaking medical discovery, life-altering surgeries, and new scientific understanding of diffuse gastric cancer.

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Overview

This episode investigates an extraordinary story from a Māori family beset by generations of early deaths due to diffuse gastric cancer. Through their determination and collaboration with scientists, this family helped identify a genetic mutation responsible for their suffering—ultimately changing the odds for themselves and future generations. The show explores the science, emotional toll, and lifelong impacts of living without a stomach, striking a blend of curiosity, empathy, and practical insight.

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Key Discussion Points & Insights

1. A Family Mystery Unfolds

• Karen Parangatai's Discovery: After her father's passing, Karen notices a troubling pattern of young deaths on his side of the family and learns it’s not an anomaly.
• Quote:
  • “She noticed that a lot of people on his side had died young. Not just her cousin, but her cousin's sister, her cousin's mother, and her cousin's grandmother all gone.”
    — Emily Kwong [00:17]

2. Genetic Warning and Difficult Choices

• CDH1 Mutation: Karen’s family suffers from diffuse gastric cancer caused by a mutation in the CDH1 gene—an inherited condition conferring a 70% risk.
• Testing and Dilemma: Karen tests positive for the gene and faces a wrenching decision: live with high risk or have her stomach removed.
  • Quote:
    • "She can get surgery to get her entire stomach removed."
      — Emily Kwong [01:38]
    • “Her reaction is just like, what do you mean? Can you live without a stomach? How would she eat? How would she replace it?”
      — Sarah Zhang [01:48]

3. Unraveling the Science and Family Advocacy

• Tracing the Gene:
  • In the 1990s, this rare cancer in Māori families led doctors to the CDH1 gene.
  • Nurse Maybelle McLeod, learning of her family’s history and dismissing the myth of a “curse,” contacts scientists to solve the mystery.
    • Quote:
      • “The way she talked about it is that nobody talked about it. They believed it was a curse.”
        — Sarah Zhang [04:49]
• Family-Led Research:
  • The family took ownership—gathering over 100 samples and assembling a detailed family tree—underscoring community-driven scientific progress.
    • Quote:
      • “…the family goes to the scientist. Right. It isn’t the other way around.”
        — Sarah Zhang [05:44]

4. Undergoing Life-Saving Surgery: What It’s Like

• Surgical Details:
  • Total gastrectomy (“removal of the whole stomach”) is complex: the esophagus is reattached directly to the intestine.
  • Post-surgery, eating changes dramatically—small bites, extreme chewing, and managing portions.
    • Quotes:
      • "You have to eat a little bit, a lot, and you have to chew a lot. Like chewing gum is how people have described it to me."
        — Sarah Zhang [07:04]
      • “One person literally told me she had a timer on her phone, and she would take a bite, chew, chew, chew, swallow, wait... Just so she wasn't eating too fast.”
        — Sarah Zhang [07:43]

5. Adapting—Physical, Emotional, Social Impacts

• Physical Adaptation:
  • The intestine forms a “pseudo-stomach.” Most people adapt, but symptoms (fatigue, nausea) can persist.
  • Vitamin B12 must be supplemented; some lifelong side effects remain.
    • Quote:
      • “Eventually, people can eat larger portions. They don’t have to eat as many meals, and they are able to maybe put on some weight back.”
        — Emily Kwong [08:49]
• Social and Psychological Effects:
  • Eating out and socializing changes; some jobs become untenable during the recovery.
  • Increased risk of alcohol abuse is a recurring, underappreciated consequence.
    • Quote:
      • “After their surgery, alcohol went down better and they found themselves drinking.”
        — Emily Kwong [10:01]
      • “There is some scientific evidence... that there is an association between getting bariatric surgery and later having higher risk of alcohol use disorder.”
        — Sarah Zhang [10:14]

6. The Broader Medical and Ethical Landscape

• Mixed Feelings and Draconian Choices:
  • Life-saving surgery is available, but doctors and patients struggle with the quality-of-life costs.
    • Quote:
      • “Perry Guilford...said, you know, I think in the future we’ll think these surgeries are draconian. We can’t believe... we were doing such draconian surgeries on people taking their whole stomachs out.”
        — Sarah Zhang [11:52]
• Shift in Protocol:
  • Now, unless you have a very clear family history, physicians may opt for monitoring over surgery.

7. Family, Connection, and Ongoing Impact

• Karen’s Outcome:
  • The surgery saved Karen’s life—and unexpectedly, helped her reconnect with her father’s family and her wider heritage.
    • Quote:
      • “She became so much closer to her father’s family. So now she has a relationship with them. Her kids have a relationship with them. And she herself is a Māori studies professor.”
        — Sarah Zhang [13:07]
  • Memorable moment at a family gathering:
    • “She kind of turned to her partner and said, you’re the only one out of the eight of us with a stomach.”
      — Sarah Zhang [13:45]

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Notable Quotes and Memorable Moments

• “Nobody talked about it. They believed it was a curse.”
  — Sarah Zhang [04:49]

• “The family goes to the scientist. Right. It isn’t the other way around.”
  — Sarah Zhang [05:44]

• “Surgeons said that it was their experience talking to patients that made them sort of consider, hey, have we, like, really thought about all of the physical and psychological side effects of getting your stomach out?”
  — Sarah Zhang [11:52]

• “You’re the only one out of the eight of us with a stomach.”
  — Sarah Zhang quoting Karen [13:45]

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Timestamps for Important Segments

| Time | Topic/Segment | |----------|----------------------------------------------------------------------------------------------| | 00:17 | Karen Parangatai discovers her family’s deadly history | | 01:27 | The CDH1 mutation and its risks explained | | 03:54 | The role of Maybelle McLeod and scientific self-advocacy | | 07:04 | The process and everyday consequences of living without a stomach | | 10:01 | Unexpected effects post-surgery, especially alcohol use changes | | 11:52 | Medical ethics, quality of life, and doctors’ evolving perspectives on prophylactic surgery | | 13:07 | Karen’s reconnection with her family and cultural roots | | 13:45 | Memorable anecdote: “You’re the only one... with a stomach” |

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Conclusion

This episode of Short Wave weaves together medical, genetic, and human stories—highlighting how a family's determination and openness reshaped cancer research and offered new hope. Through the voices of Karen Parangatai and journalist Sarah Zhang, listeners get an intimate look at life-changing choices, scientific mystery-solving, and the enduring impact of family and culture, “even if it means living without a stomach.”

Transcript

[Commercial Announcer]

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[Emily Kwong]

You're listening to Short Wave from npr. When Karen Parangatai's father died, she did what a lot of people do. She reconnected with his side of the family. And a pattern she learned on that side of the family changed the course of her life. She noticed that a lot of people on his side had died young. Not just her cousin, but her cousin's sister, her cousin's mother, and her cousin's grandmother all gone.

[Sarah Zhang]

So the family started to realize there must be something wrong.

[Emily Kwong]

Sarah Zhang is a staff writer at the Atlantic. She recently wrote a story on Maori families like Karen's where long lines of people have died from a rare form of stomach cancer called diffuse gastric cancer. It causes cancerous cells to percolate undetected in the stomach lining, only becoming obvious in advanced stages. But by then, it's usually too late to treat. That's what happened to Karen's cousin.

[Sarah Zhang]

And so after this, Karen hears from her auntie who tells her, you know, you need to get tested because there's this mutation that's running through our family that gives you a really high risk of stomach cancer.

[Emily Kwong]

Now, if she tested positive for this mutation, Karen would have a 70% chance of developing this form of cancer.

[Sarah Zhang]

She does get tested and she finds out she is positive for the mutation.

[Emily Kwong]

But then doctors tell Karen about one unexpected life saving option. She can get surgery to get her entire stomach removed.

[Sarah Zhang]

Her reaction is just like, what do you mean? Like, can you live without a stomach? How would she eat? How would she replace it?

[Emily Kwong]

And Sarah says both options come with risks. A 70% chance of deadly cancer or surgery with a 100% chance of significant side effects. Today on the show Life Without a How Maori families have advanced scientific understanding of a rare form of stomach cancer and are beating the odds of survival. I'm Emily Kwong, and you're listening to Shortwave, the science podcast from NPR Foreign.

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[Emily Kwong]

the best of public radio, personalized for you, your favorite podcasts like shortwave, your local station, and the world's biggest stories. Download the NPR app in your app store today. Back in the 90s, doctors found a rare form of cancer in Maori families, and they traced it to a mutation in the CDH1 gene. Now, this gene encodes a protein that normally orients and aligns cells in the stomach, but without it, Sarah Zhang writes, the cells become lopsided, rogue, and possibly cancerous. Any parent with a mutation in the gene has a 50% chance of passing it on to their children. But the reason doctors even know about the gene at all is because of one Maori woman, Maybelle McLeod. So Sarah, let's pick up with her story. What did May Belle do when she realized her family had a history of stomach cancer?

[Sarah Zhang]

Yeah, so the way she talked about it is that nobody talked about it. They believed it was a curse. So you sort of, you know, you thought if you talked about it, you might be the next one to fall to the curse. There's actually an article from the 1960s that talks about this particular family, which is in fact the McLeod's, where I think a 21 year old came in with this type of diffuse gastric cancer. This family has lived with this history of stomach cancer for a really long time. Mabel herself is a nurse and she goes to a genetics conference and she realizes, you know what, this, this is not a curse. This is genetic. And she decides to contact the scientist, a geneticist, to figure out exactly what the gene in her family is.

[Emily Kwong]

It's like a science sleuthing story. She's like, there is an answer to this, and I think it could help us. So I'm gonna go get those answers for myself. So what does the McLeod family ultimately do and find?

[Sarah Zhang]

Yeah. So they agree to be studied by a scientist named Perry Guilford. And I think it's really unusual and interesting, is that the family goes to the scientist. Right. It isn't the other way around. And they were very clear that they, you know, they were the ones who were gonna go around and collect the samples. They didn't want Perry knocking on doors or calling on people.

[Emily Kwong]

This family answers for themselves. Yeah.

[Sarah Zhang]

Yeah. So they end up collecting, I think, about 100 samples for the family, living relatives. They actually also got archival samples from relatives who had died from stomach cancer years ago. And the other part is that not only they had to collect the physical samples is that they were also building their family tree back generation.

[Emily Kwong]

Wow.

[Sarah Zhang]

Because not only do you need the, you know, genetic analysis, but you have the family tree to have something. How a mutation runs through the family.

[Emily Kwong]

Wow. So because of May Belle's work, they discover this connection between stomach cancer and this particular gene. CDH1 may Belle didn't have it, but Karen Paringitai, who we met at the top of the episode, did. She now faces an agonizing decision to remove her stomach or not. She did decide to go through with the procedure in 2010. What is that procedure like to get your stomach removed?

[Sarah Zhang]

It is a long surgery. It's a complicated surgery. The very simple way of explaining it is that basically they cut your abdomen open and they take out your stomach and then reconnect your intestine to your esophagus. But of course, there's still scarring on the inside, and it takes a while to recover. So the first few days after surgery, you can kind of really only eat soft foods. And you have to eat a little bit, a lot, and you have to chew a lot. Like, chew like chewing gum is how people have described it to me. Whoa.

[Emily Kwong]

You have to masticate.

[Sarah Zhang]

Exactly.

[Emily Kwong]

Because your stomach juices are not going to break that down for you.

[Sarah Zhang]

One person literally told me she had a timer on her phone, and she would take a bite, chew, chew, chew, swallow, wait. And then take another small bite. Chew, chew, chew, swallow, wait. Just so she wasn't eating too fast.

[Emily Kwong]

Besides the changes to eating, what other changes did Karen experience? Because what you eat is so connected to, like, your blood sugar and your energy levels. And how was that for her?

[Sarah Zhang]

Yeah, yeah. 100%, I think, you know, Also, what you eat is so connected to how you socialize. Right. Like, true. She talks about how it was really hard to go out to dinner with friends because she didn't know if she would, you know, suddenly, like, feel faint or sick in the middle of dinner or after dinner, and you lose a lot of weight. Sometimes people have had to change jobs because they can just no longer have the physical stamina. And so these are things that usually change over time. I think what I universally heard is that the first six months of the year can be really difficult. And then, you know, some people find you are pretty much back to normal, and some people find that they still struggle with fatigue or nausea or vomiting. Yeah.

[Emily Kwong]

Reading the piece, I was just amazed at the changes happening on the inside as your body. Like, you write about how the upper part of the intestine adapts into a pseudo stomach. So part of your body is like, ugh, I got it. I will be the stomach for us now. And eventually, people can eat larger portions. They don't have to eat as many meals, and they are able to maybe put on some weight back. And you talk about how people still need regular shots of B12 because you need your stomach and stomach acid to release the B12 from food. But otherwise, are people able to live as if they have a stomach without one? Yeah.

[Sarah Zhang]

There are some people who have said to me, like, they have friends who are like, what? You don't have a stomach? I would have no idea. Like, you eat totally normally. You are a total foodie. Other people have said to me, like, oh, like, everything is normal, except it's really hard for me to drink water. We don't really know why. We think it maybe is like, the surface tension of the water makes it really hard to go down the esophagus. On the other hand, there are people who say water is totally fine. I talked to someone else who was, like, drinking from a liter bottle of water on our zoom call the entire time we were talking. It's really very person to person. Yeah.

[Emily Kwong]

You also write how in a number of your conversations, people opened up about alcohol and alcoholism, that after their surgery, alcohol went down better and they found themselves drinking. How common was that?

[Sarah Zhang]

Yeah, it came up in, I would say, the majority of my conversations. So, like, after this kept happening, I was like, huh? I think this must be, like, a real pattern. And there is some scientific evidence to suggest that there is something here. Right. There is, like, an association between getting bariatric surgery to lose weight and then later having higher risk of alcohol use. Disorder. So while we don't really know exactly what the cause is or what the causation is, a number of people who get part of their stomach removed end up having a higher chance of developing alcohol use disorder. You know, probably the way alcohol moves through your stomach is different. And of course, there's also just like the psychological component, right? Like, you know, on one hand you're dealing with the fear of cancer, and then you're dealing with, like a huge change in your daily life. One man I talked to, James, you know, he talked about how it was really quite hard right after the surgery because he found it really difficult to, you know, provide for his daughter. He couldn't pick her up, you know, drive. So that might be part of it as well.

[Emily Kwong]

You know, it's interesting how medicine has come so far, right, that we can test for mutations that are likely to lead to cancer. We can reduce people's risk for cancer in this big way. But it also puts a really tough choice on people's shoulders, which is to have a part of their body removed. And reading your piece, you know, it sounded like even doctors who were performing these preventative surgeries had mixed feelings because there is a 100% chance that their patients are going to have some kind of side effects or complications. So what do you make of where we're at with medicine right now that these are the choices people face?

[Sarah Zhang]

Yeah, you're exactly right. Like, it's incredible how much progress we made, but how far we still have to go. You know, Perry Gilford, the geneticist who discovered the mutation, he said, you know, I think in the future we'll think these surgeries are draconian. We can't believe. I can't believe we were doing such draconian surgeries on people taking their whole stomachs out. And I think, you know, everyone would love to have a better treatment option. This is a really invasive surgery. It is really life changing. I think another piece of this there have. I talked to a couple of surgeons who said that it was their experience talking to patients that made them sort of consider, hey, have we, like, really thought about all of the physical and psychological side effects of getting your stomach out? As a surgeon, you can often look at outcomes like how much weight was regained after two years. And then I think there's sort of like the more qualitative part of, like, what is your quality of life after two years, which is harder to capture in a number on a chart, on a paper. So I think the difference now is that if you do not have a family history. I think surgeons are much more comfortable saying, let's wait, let's do the endoscopies and see what actually happens.

[Emily Kwong]

As for Karen, how's she feeling about getting her stomach out?

[Sarah Zhang]

You know, I think she feels like it saved her life. The other piece of this is that, you know, we started talking. When I talked to Karen, she sort of told me a lot about her father's family and sort of what her father did. And she, because of this sort of ironically, because of this mutation, she became so much closer to her father's family. So now she has a relationship with them. Her kids have a relationship with them. And she herself is a Maori studies professor. So one of her research projects was, in fact trying to understand how a mutation affects a family like hers.

[Emily Kwong]

That's so cool.

[Sarah Zhang]

Yeah. Through this, she, like, really reconnected with her family. And she told me that she was visiting her family recently and she was there with her perc partner and the rest of her family. There were eight of them. And she kind of turned to her partner and said, you're the Ottawa now. He's like, well, yeah, I'm not, you know, a member, like a blood relative of your family. And she was like, no, you're the only one out of the eight of us with a stomach. Wow.

[Emily Kwong]

Sarah Zhang for the Atlantic, thank you so much for talking to me about this family and the contributions of the Maori people to, like, cancer research and what it's like to live without a stomach. Super interesting.

[Sarah Zhang]

Yeah, thank you. It was great talking to you. If you like this episode, please follow

[Emily Kwong]

us and share it with a friend. We're trying to grow our audience and we know you have someone in your life who would like a little sciency palate cleanser during their commute, an interesting story they can share at the dinner table, or just a fun fact about the world around us. This episode was produced by Rachel Carlson and edited by our showrunner, Rebecca Ramirez. Tyler Jones is our fact checker extraordinaire. Kwesi Lee was the audio engineer. I'm Emily Kwong. Thank you for listening to Short Wave from npr. See you next time.

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[Sarah Zhang]

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[Emily Kwong]

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[Sarah Zhang]

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[Emily Kwong]

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