Co Antrim woman on going from 50% chance of survival to opening own business

A woman from Co Antrim has followed her dreams and opened her own business despite being given a 50% chance of survival just a few years ago.

Demi Nelson, 23, is from the Ballyclare area and since she was around two-years-old, experienced regular fainting episodes. Countless visits to doctors over the years, mostly in the Channel Islands where she spent much of her youth, left her feeling like she was “going mad” as she was told she was fine.

When she was 16, Demi had a fainting episode where she was unconscious for much longer than she had been before. This prompted doctors to fit her with a 48 hour ECG to monitor her heart, and led to her shocking diagnosis of a third degree av block – a total heart blockage.

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The Co Antrim woman went through a botched surgery to fit a pacemaker, followed by corrective surgery that saved her life. Now, she has been given a second chance at life, and has opened her own hairdressing business, Hair by Demi in Whiteabbey.

Speaking to Belfast Live about her experience, Demi wishes to raise awareness of the signs and symptoms of the condition, while inspiring others to follow their dreams.

She said: “I fainted for the first time when I was two-years-old. Just before I would faint I would have a pounding in my chest, and I would feel really sick and lightheaded.

“When I would faint, everything would go black, then I would wake up again, take a minute or two to come around, then just get on with my day. It was happening to me all the time for years.

“I didn’t know I had a heart condition – I would go out running and faint, then just get back up and keep going, because doctors always told me I was alright, that it was just my hormones.

“There was never a proper investigation into what the issue was, when I was a baby and had fits, when I went to the hospital the fit had already happened. Any ECG I had would be after the fit, and was just showing my heart was normal.”

Living in the Channel Islands as a child, Demi said she would always fall and break or fracture her ankles. A doctor said she had hypermobility, which can lead to some lung and heart defects. However, other doctors would argue with this.

Her fainting episodes continued, and at the age of 14, she was bed-ridden for a year. Demi explained: “They suspected I had glandular fever and tonsillitis, as well as ear infections.

“But obviously, if your heart’s not working, you’re not going to work. I couldn’t even walk down the stairs without needing five minutes to catch my breath.

“They put the reoccurring infections down to post viral fatigue because of glandular fever – I was taken into hospital with quincy and kept in for three days and they still didn’t catch on that I had an issue with my heart.”

Demi wasn’t held back a year in school despite her absences, and did her GCSEs at the same time as her peers. She was given special consideration on her results and attended a performing arts college in Guernsey.

“My fainting episodes continued, I was constantly being taken out of school to go to the doctors,” she added.

It was here, aged 16, she had a fainting episode that would lead to her diagnosis and emergency surgery. Demi said: “I was going down the stairs and collapsed, but they couldn’t wake me up this time. This was the longest I’d ever been out for.

“My mum was alerted from the college I wasn’t waking up, and she called the GP saying something needed to be done. The GP said because I was over 16 I had to give consent to speak to the doctor – even though I was unconscious on the floor at the time, she was ringing my phone.

“They agreed to put a 48 hour ECG on me to finally see what the issue was. The day after I had it taken off, I woke up to around five missed calls from an unknown number and ten from my dad.

“The doctor called my mum and said I had a third degree heart block, and my heart was stopping 30 times a night for around 20 seconds at a time. They sent a cardiac team on an air ambulance to pick me up and take me to Southampton for emergency heart surgery.”

Demi said her diagnosis came as somewhat of a relief, after years of being told she was okay. However, an issue with her surgery to fit a pacemaker led to more difficulties, resulting in corrective surgery.

The 23-year-old said: “For the past 16 years, doctors had been telling me I was okay, I was making things up, it was all just my hormones. I was almost grateful to find out it wasn’t all in my head, and I wasn’t going mad.

“I went in for heart surgery to get a pacemaker fitted, and they did it wrong, part of it was sitting out of my skin. I was having diaphragm stimulations, which means any time my pacemaker was going off it was shocking my chest and making it jump.

“After the surgery, I wasn’t fainting as much but it was still happening. I ended up having to fly home and get further surgery at Belfast City Hospital. Dr Chew was the cardiac surgeon who assessed me on my arrival to Belfast.

“She said they needed to do corrective surgery however, there’s only a 50% chance of survival with it. But if I didn’t get the surgery, I was going to have a really bad quality of life.”

Aged 17, Demi took a gamble and had the corrective surgery that saved her life. Now, she had opened her own business, and is keen to make a change, with a focus on fundraising to help those who find themselves in a similar position to her younger self.

She said: “I just value every day and I just think I’ve been kept here for a reason, there’s no doubt about it. For my parents to be told my heart was stopping and there’s not much of a medical explanation for me to be alive right now, I’m very grateful to be here.

“Dr Chew has not just saved my life, but she’s given me a whole new quality of life. I’ve never felt this well, I didn’t know what it was like to feel okay. I owe her my life.

“I’m really chuffed to be given the chance to make a difference. I’ve got some charity buckets in the shop, as I want to help the paediatric cardiac services in Northern Ireland.

“I know what it’s like for families to be taken out of their comfort zone and thrown into the deep end. When I was sharing the ward with those babies and young children in ICU in Southampton Hospital, the thought of their families having to go somewhere foreign to them, not going to their own bed at night, I really just wanted to do something to make a difference to help other families.”

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