Cause of Death Channel 5: Lancashire man shares family ordeal as wife and mum of two dies suddenly

Richard Lewis’ life turned upside down earlier this year when his 52-year-old wife Mandy, mother of their two children Annabel, 28 and Harry 25, died of sudden arrhythmic death syndrome (SADS).

Also known as sudden adult death, it is a rare disorder which kills 500 people a year in the UK, two a year in Lancashire.

Richard, a 53-year-old former lecturer, who has now taken over Mandy’s role as full time carer for Harry who has down syndrome, spoke to digital reporter Aimee Seddon ahead of appearing in Channel 5’s Cause of Death programme on Wednesday (December 13).

What happened to Mandy?

As part of their morning routine the active couple would always go to their local sports centre in Colne together: Richard to the gym and Mandy to the swimming pool but on May 25, Richard took the dog for a long walk instead - of course unaware that this would not be the most unusual thing about the day.

Richard told our reporter: “We didn't actually speak on the day, the last thing I said to her was ‘good night, I love you’.”

Whilst Richard was out dog walking with no phone signal, his daughter received a call from one of Mandy’s friends at the swimming pool saying she had had a “funny turn” and the family should come quickly so Annabel drove to meet him.

“I saw Annabel in her car and I just assumed she was going to work early so I waved but then I heard her shout ‘dad’ in this frightened voice”, he said.

After hearing what had happened, and dropping off the dog with family, the pair headed to the sports centre where they were met with police, paramedics and first responders trying to resuscitate an unconscious Mandy.

Richard said: “It was chaos in all honesty. I was going with the mindset of her having a funny turn, she’s maybe passed out or she's not feeling very well but when we got there they said she had had a cardiac arrest which was very very tough to deal with.”

After an hour, Mandy was taken to the Royal Blackburn Hospital, where she continued to receive CPR for another hour or so.

Seconds after the doctors said there was nothing more they could do, Mandy’s heart began to beat again and she was placed on life support while doctors carried out an angiogram and CT scan to - unsuccessfully - find an underlying cause. 

Richard, who would have been married to Mandy for 30 years next year, said: “You cling on to hope… but the damage was already done, she'd been without oxygen, without her heart working for 90 minutes. You only found these things out when events like this happen but your brain can only be without oxygen for four minutes maximum before brain damage starts. I assumed that the CPR and the life support machine putting oxygen into her were keeping her alive but that's not what happens, it’s not enough to keep the brain alive. Ultimately if Mandy had survived she would have been brain damaged."

Tragically Mandy did not survive as two days later, on Saturday May 27, the family had to turn her life support off.

Richard said: “I'm thankful that her heart did start again and we were able to be at her bedside for 36 hours - it gave her mum a chance to come back from Africa… and gave us all, as a family, time to try and come to terms with it. It’s a tough decision having to turn the life support off but you’ve got to take the medical advice and then deal with the aftermath afterwards. It’s been a very tough six months.”

Why did the family appear on Cause of Death?

The family were approached soon after Mandy’s death by the coroner’s office who asked if they would be happy to feature in the programme, and Richard - who had seen the show before- agreed.

Explaining why, Richard said: “Some of the family were like ‘no, no, invasion of privacy etc’ but some of just got a gut feeling that it was the right thing to do. Because of it being so sudden and unexplained at that moment in time, I thought if every stone’s going to be turned to try and find out the reason behind it, then I'm all for it. I think that would have happened anyway, whether we were involved with the production team or not, but now I’m glad we did it because not only are they all great guys, I think it's genuinely helped all of us. They’ve been very sympathetic towards things, all the filming, all their attitudes were just bang on. I’ve never felt an invasion of privacy as such, even though they've been in our house half a dozen times more and we’ve done a lot of filming. 

“The biggest thing for me is ultimately, Mandy's funeral was recorded on film and drones which I'm hoping I can see at some point, because I can't really remember the day, I can remember clips but it was the worst day of my life. I’m thankful that it's actually been recorded because even though it was a sad day, we tried our best to celebrate Mandy’s life because she was too young to have a morbid funeral.”

Were further tests conclusive?

Mandy’s death was handled by Dr James Adeley, Senior Coroner for Lancashire and Blackburn with Darwen but the post mortem, as shown in the TV program, failed to answer any questions - “there's no explanation around it” Richard said.

Dr Adeley referred Mandy’s case to the Manchester Centre for Genomic Medicine and when “they found nothing” too, the family donated her heart to medical research but an international pathologist at St George’s Hospital in London also found nothing conclusive.

Richard said: “Ultimately, she was a picture of health, every organ in the body, every artery was clear - everything. She was a very active, very fit lady… she'd worked hard for maybe five years, swimming three to four times a week… then weekends we'd be walking with the dog, with our horses - up at five o'clock, off down the road, back at whatever time at night, just busy, busy, busy.”

Checks have now been done on Mandy’s relatives to see if there is anything genetically there, and whilst they have found one of her sisters and Harry have a slight valve issue, it is nothing major and not directly linked to Mandy’s death. 

Richard commented: “[The consultant] said it's very alarming because they haven't found anything in Mandy's genetics, it's just a freak of nature ultimately. That's what they’re putting it down to which is slightly frustrating to say the least, I always assume you're gonna get an answer so when we're told that there won't be an answer, it's hard to take on board, you’re going to live going forward wondering what if? What do you do about no explanation?

“They’re still doing further genetic testing. I believe the genetics team have got a further two years of funding to do further investigations. Technology moves on… so who knows, maybe in 10 years time, they might say ‘we found something here’ but I don't think they will. I think it's just been one of those things.”

And will the family watch the show?

Richard answered: “Absolutely, and I'm hoping that everybody else is. I have had some family and friends who have said they've started to watch the series but they won’t be able to watch Mandy's episode, which is sad really but each to their own.

“I haven't actually seen the final cut that they're going to show, although I was offered the opportunity. I said I’d see it on the night which is ironically Harry's birthday. It's just how it fell… but I don't think it's a bad thing. I've asked Harry and his actual words were ‘Does that mean I'm gonna see my mum on my birthday’ - I’m filling up now thinking about that. I said, ‘yeah you will but not in real life, you're going to see her on TV’ which will make me proud. It’ll be a tough watch without a shadow of a doubt.”

Are the family doing anything else to raise awareness?

Richard did the soap box challenge in Colne to raise awareness and funds for the British Heart Foundation and Down Syndrome Association, currently raising just shy of £8,000.

Next year, he hopes to do some parachute jumps and climb Mont Blanc, Kilimanjaro and even Everest.

He explained: “I just want to do something to give back. If we're raising funds for the British Heart Foundation and they can do further research - ultimately what I've said to everybody is if one person is saved… then job done. That's our aim and if it opens things up and helps more people, fantastic.”

You can donate to the familie’s JustGiving page here.