Tuesday, April 23, 2024

‘People Say Really Stupid Sh-t To You When Your Child Has Been Diagnosed With Cystic Fibrosis’

When Ingrid Grenar founded ‘What The CF! A Cystic Fibrosis Podcast’, it was because she didn’t want any other family going through the lonely experience that her family had gone through, when their youngest child Orson was diagnosed with cystic fibrosis. She talks to Capsule about starting the CF journey in a pandemic, processing the many emotions that come with diagnosis and the ‘well-meaning but thoughtless’ comments that came from others.

It was a combination of Google and folklore that first led ‘What the CF! A Cystic Fibrosis Podcast’ founder Ingrid Grenar to first consider that her newborn son, Orson, might have cystic fibrosis.

“He had been a nice and pink and happy, healthy baby,” Ingrid says of her second child (her eldest, Harrison, was two when Orson was born) and he had flown through all of his milestones, with nothing picked up on his newborn heel prick test, which also includes screening for the most common CF genes. But when he was 10 weeks old, Orson came down with a cold and then developed a cough that he couldn’t shake.

‘A good friend told him, “Well, you can have other children.”’

By the time Ingrid had taken him to the doctor four times, she knew something wasn’t right and she had started Googling the possibilities. An old folklore, ‘Woe to the child who tastes salty from a kiss on the brow,’ had long been associated with cystic fibrosis, because people with CF have saltier skin than normal – and Ingrid knew Orson also had this.

“I knew he had the salty skin and I knew he had the cough. It was hard to mention the salty skin to the doctor, because part of me just didn’t want to say it. It just couldn’t be possible as he’d been negative in the newborn screening,” Ingrid recalls.

Orson when he was a baby

At the end of 2019, Ingrid and her husband Ian booked in to see a specialist but the wait meant that they couldn’t get in until February 2020. And so began the diagnosis snakes and ladders process that eventually ended up proving that not only did Orson have cystic fibrosis, but he had gene combination that is so rare only 20 people in the world also share it.

Cystic fibrosis is a life-limiting incurable genetic condition that affects around 540 New Zealanders and more than 70,000 globally; as it currently stands, many of those with the condition don’t make it out of their 30s and 40s. A CF diagnosis is nearly always a shock to parents, Ingrid says, as an individual will rarely be aware they are a carrier of the gene and parents who are both carriers have a one in four chance of having a child with CF. Therefore it’s possible to have children and never have a child with CF. To make matters harder, all of this happened just one week before the whole country went into our first Covid lockdown in March 2020.

“Dealing with a respiratory pandemic and the knowledge that our six month old baby had cystic fibrosis,” Ingrid shakes her head. “We were thrown this bombshell where there was so much to deal with.”

Because they were in lockdown, Ingrid and Ian chose to share the news with their friends and whānau over Facebook, and that’s when they got their first experience of how well-meaning but thoughtless some of these first responses can be – and how quickly they had to get up to speed on what is a very complex condition.

On top of that, they then found out that the cystic fibrosis community is – by necessity – a very separated one, because people with cystic fibrosis cannot be in contact with each other, due to the cross-infection risk of dangerous germs and bacteria. All of this, on top of lockdown, created a strong sense of isolation.

“It was an incredibly lonely time,” Ingrid says. “After the diagnosis, it’s already a very lonely place. And for the majority of people, they’re getting that diagnosis with a baby that’s two or three week’s old following the heel prick test. All I could think of was, if you’re a first-time parent, and you’ve got this newborn baby, on top of being told they’ve got this life-changing, life-limiting, hideous condition… it’s too much for someone to deal with.”

This is where the idea for the What the CF! A Cystic Fibrosis Podcast first came from – a way for the community – and particularly parents facing a new diagnosis – to hear from each other, safely and conveniently, and help spread kind, thoughtful wisdom from people who have been there.

Ingrid spoke to Cystic Fibrosis New Zealand and they were very supportive, offering experts and information along the way. Ingrid launched the website and the social media and started recording episodes covering the different ranges of topics – for parents whose children have cystic fibrosis (particularly young children), for those living with cystic fibrosis,  and for loved ones who want to know more about the condition (without having to put the burden on parents to educate them). Because of the nature of the podcast, and having the focus be more on the parent side of the experience, it’s a unique offering in the CF space and is now reaching a global audience.

The feedback to the initial episodes was swift and effusive, many parents thanking Ingrid for helping them feel less alone. And Ingrid says recording an episode about Orson also helped her and Ian process their own thoughts about their son’s diagnosis as well. “It was pretty much the first time we’d discussed it as a couple, and it was six months after he’d been diagnosed,” Ingrid says.

“It took us two hours to record what is now a half hour episode and it was emotional, but we also got the giggles a lot due to the intensity of what we were talking about. We got really good feedback; we had people messaging that they felt a lot less alone in all of the emotions that come with a cystic fibrosis diagnosis.”

A recent photo of Orson

Because, Ingrid says, it’s a particular range of emotions. There’s what you would imagine – anger, grief – but there’s also the annoyance and frustration with how others respond. “We’re all taught – and particularly as women – to be polite and kind to people, and that people are well-meaning,” Ingrid says. “But people say really stupid shit to you when your child has been diagnosed with a life-long, life-limiting genetic condition.”

She refers to one person – who was part of the Dad’s What the CF! episode – whose good friend told him, “Well, you can have other children.” But it’s not those thoughtless examples that are the most hurtful, Ingrid says.

“One of the worst things that happened is people being or saying to ‘be positive’ about this,” she says. “And there isn’t anything positive about it – I don’t care if there are drugs. The positive part would be if Orson didn’t have cystic fibrosis… but he does. So an acceptance of the reality is needed by everybody and as a society, we’re really taught ‘think positive, practise gratitude’ and that’s not what parents in this situation need. Because that’s really frustrating and isolating.”

As part of What The CF!, Ingrid speaks to a lot of people living with cystic fibrosis in their lives and aims to be factual but warm in those discussions. “We never want to be just doom and gloom,” Ingrid says. “There are ridiculous things you can laugh at along the way.”

She mentions an anecdote from Lizzie McKay (Communications Coordinator at CFNZ) from episode nine ‘Transplant’, which is a perfect example of how necessary a dark sense of humour can be in these trying circumstances. “The first time Lizzie walked on the beach after her lung transplant, to take her dog for a walk, she got a $200 fine for taking a dog on the beach,” Ingrid says. “I mean, you can’t not laugh at that. ‘I’m alive… and now have to pay $200.’”

One of the biggest hurdles facing the cystic fibrosis community in Aotearoa is lack of access to a life-saving drug called Trikafta. It’s “a miracle drug”, Ingrid says, funded in many countries, which effectively corrects the genes while you’re taking the drug – so it’s not a permanent cure, but it is hugely life-altering while you’re taking it.

It’s not funded here and Ingrid has recently interviewed a man living in NZ who is self-funding at a cost of over $300,000 a year. It means that families with cystic fibrosis in Aotearoa are having to look at possibly moving countries in order to help their loved ones live. As they’re originally from the UK, the decision to remain in New Zealand is one that Ingrid and Ian are possibly going to have to look at as Orson grows up.

“It shouldn’t be something that family members are having to think about in 2022,” Ingrid says. “We should have access to the medications that we know treat people. Because Orson is young, we don’t have that urgency but for people in their teens and adult years, it is life or death.”

For more information on What the CF!, check out the podcast, the website and the social media community. To support Ingrid and the production of the podcast, visit here. If you’d like to get in touch with Ingrid, you can email her at [email protected].

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