‘I’m heartbroken Harry, 2, might not remember me’, says terminal mum facing last Christmas after ‘dry cough’

A MUM with a terminal lung condition who may not be alive next Christmas says the possibility of her two-year-old son not remembering her “is heartbreaking”.

Fiona Hinton, 42, began experiencing breathlessness and a dry cough in 2017, which turned out to be early signs of pulmonary fibrosis – a condition that progressively scars the lungs and makes breathing difficult.

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Fiona Hinton was diagnosed with pulmonary fibrosis at the age of 37[/caption]

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She’s been told by doctors she has just two years to live without a transplant[/caption]

In 2019, at the age of 37, Fiona was diagnosed with the condition which is incurable and considered rare in those under 50.

After being told by doctors she’d have just two years to live without a transplant, she’s now awaiting a lung donor match.

Between 2017 and 2021, Fiona, a global data ingress manager from Poynton, Cheshire, and her husband Alan, 42, a teacher, underwent IVF after Alan had stage four cancer in his 20s, which he’s since recovered from.

After five failed rounds and a miscarriage, they unexpectedly conceived naturally in 2022, and Fiona gave birth to their son Harry, now two, that October.

But in 2023, Fiona was told she may have just two years to live without a transplant.

While she said the thought her son might not remember her is “heartbreaking”, she believes Harry has given her “hope” and she’s focused on creating lasting memories with her family this Christmas, while remaining hopeful for a lung donor match.

Fiona said: “Harry brings us so much joy … he has given me hope, and a reason to live in a way, in that you feel quite bleak when you’re in a terminal illness situation, and having Harry has made me fight harder to be fitter, to try and stay around as long as I can.

“But I think ‘you’re not going to remember me, you’re not going to know who I am’.

“I find that hard because we waited for him for so long and I love him so much that the thought that he won’t remember me or won’t really understand is quite heartbreaking.

“I don’t think he’ll know me … but I enjoy him being an innocent, happy little soul and every day is fun for him.”

At the age 35, in 2017, Fiona developed a persistent dry cough and began feeling breathless after minimal activity, such as climbing stairs.

Initially, she thought she “must be really unfit”, but despite increasing her exercise to improve her fitness, her condition didn’t change.

Over time, Fiona also experienced light-headedness and extreme fatigue.

Terminal diagnosis at the age of 37

In November 2019, at the age of 37, she was diagnosed with terminal pulmonary fibrosis.

Her condition is idiopathic, meaning doctors don’t know the cause, though they confirmed it is not genetic.

Having to face your own mortality is its own special experience, particularly when you’re younger.

Fiona Hinton

She said: “It is a case of bad luck. I remember getting out of the hospital, my mum and dad had waited for me, and I just cried and cried in the car, and I was like, ‘I don’t understand, I’m 37 and I’m dying’.

“It was a lot to process. Having to face your own mortality is its own special experience, particularly when you’re younger.

“It felt like I was losing the opportunity to live essentially, it was a tough pill to swallow.”

Fiona feels “blessed” to have a “close-knit” group of friends, family and her husband, who supported her through that time, and continue to do so.

Pregnant with Harry

In May 2022, after five failed rounds of IVF, Fiona discovered she was pregnant at 13 weeks – which she says she and Alan couldn’t believe.

Her pregnancy was challenging; she felt even more breathless and, near the end, required a wheelchair and higher oxygen levels.

While the birth by Caesarian section in October 2022 went smoothly, Fiona struggled with postnatal depression and received support from the charity Action for Pulmonary Fibrosis.

With their help, Fiona feels that having her son, Harry, has brought joy into her daily life.

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Fiona fell pregnant with Harry naturally after five failed rounds of IVF[/caption]

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She says Harry has brought her and Alan so much joy, but is heartbroken at the prospect of him not remembering her after she’s gone[/caption]

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Fiona says Alan has been relentlessly positive, particularly as she doesn’t know if this Christmas is her last[/caption]

“He’s transformed our lives in a way that I can’t really articulate – he’s the light of our lives,” she explained.

“It’s hard work, but we love him to pieces.

“I think with babies, you can’t help but be in the moment with them, because they need you right now.

“It made me realise there’s no point worrying about what comes next, because I’ve got to deal with him throwing his toast around after me cutting it up into little pieces!”

Challenging symptoms

Day to day, Fiona remains physically exhausted, struggles to breathe, and must be vigilant about avoiding colds and infections.

Despite her challenges, she feels her illness has deepened her appreciation for her loved ones and helped her realise there is life after a terminal diagnosis.

It’s all about making memories, and that’s what we tend to focus on – my husband is relentlessly positive.

Fiona Hinton

After being told last year her life expectancy is two years, leaving her uncertain if this Christmas will be her last, Fiona is determined to make this Christmas as special as possible.

So far her family has had breakfast with Santa and they plan to spend as much quality time together as they can.

“This year in particular is emotional for me and I don’t know if it’ll be my last Christmas, and with Harry, it doubles the poignancy,” Fiona said.

“It’s all about making memories, and that’s what we tend to focus on – my husband is relentlessly positive.”

However, she cannot help but worry that her son may not remember her as he grows older.

She also finds it difficult that, because of his age, she cannot have a meaningful conversation with Harry about her condition or the importance of this Christmas.

Patiently waiting

For now, Fiona remains on the lung transplant list, hoping for a match to prolong her life.

In 2022, the NHS Blood and Transplant service reported that on average 83 people out of 100 live for one year after a lung transplant and 55 people out of 100 live for five years after a lung transplant.

To other parents with a terminal illness, she advises seeking help.

She added: “Speaking to a charity such as Action for Pulmonary Fibrosis was amazing – they were and still are a lifeline for me.

“I would also encourage anyone to share their wishes with their loved ones if they are willing to become an organ donor. It’s lifesaving.”

Action for Pulmonary Fibrosis supports anyone affected by pulmonary fibrosis. The charity also funds vital new research to help improve our understanding of the disease that could help lead to new treatments in the future.

For more information visit: www.actionpf.org, and for support call 01223 785725 or email supportline@actionpf.org.