Mum who thought symptoms meant she was just unfit diagnosed with terminal condition

A mum suffering from a terminal lung condition, who fears she may not be around for next Christmas, has said the possibility her two-year-old son will not remember her "is heartbreaking".

Fiona Hinton, 42, began experiencing symptoms of breathlessness and a dry cough in 2017, which were later identified as early signs of pulmonary fibrosis.

Diagnosed with the incurable condition at the age of 37 in 2019, Fiona's case is rare for those under 50, according to NHS guidelines. Between 2017 and 2021, Fiona and her husband Alan, 42, a teacher and stage four cancer survivor, underwent IVF treatment.

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After five unsuccessful attempts and a miscarriage, they naturally conceived in 2022, resulting in the birth of their son Harry in October of the same year. In 2023, Fiona was given a life expectancy of just two years without a transplant.

Despite the heartbreaking prospect of her son potentially not remembering her, Fiona says Harry has given her "hope". She is now focused on creating lasting memories with her family this Christmas, while remaining hopeful for a suitable lung donor match.

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Fiona, in an emotional interview with PA Real Life, 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."

She added: "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."

'I'm 37 and I'm dying'

At 35 years old in 2017, Fiona began to suffer from a persistent dry cough and breathlessness after minimal activity, such as climbing stairs. Initially dismissing it as poor fitness, she increased her exercise, but her symptoms persisted.

Alongside this, she experienced dizziness and severe tiredness. In November 2019, at age 37, Fiona was diagnosed with terminal pulmonary fibrosis, an idiopathic condition, which means its cause is unknown, though doctors have ruled out genetic factors.

Reflecting on her diagnosis, 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, a global data ingress manager from Poynton, Cheshire, says she feels "blessed" for her close friends, family, and husband, who supported her through that time and continue to do so.

Fiona and Alan went through IVF between 2017 and 2021. Using Alan's frozen sperm, they endured five failed rounds and one miscarriage before deciding to stop trying in 2021. However, in May 2022, Fiona discovered she was 13 weeks pregnant.

"I never believed, honestly, that people could get pregnant and not know about it, but that is what happened to me, and it was just an incredible miracle," Fiona said.

"We couldn’t believe it. I had a scan the next day and that will forever be one of the most amazing moments in my life."

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.

Fiona said: "I wish I knew about Action for Pulmonary Fibrosis sooner. I was in the depths of despair and I phoned their support line, and I got through to a lady called Chloe, who was just wonderful.

“She was so kind and just understood it and was practically helpful as well. I started having people come to help me in the house, and it took all the burden away and gave me a sliver of hope in a time where I was really feeling quite bleak and desperate."

'It's all about making memories'

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

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

This year, Fiona is determined to make this Christmas as special as possible – her family has had breakfast with Santa and plans 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.”

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, Fiona 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.