A mum whose two brothers, two sisters and niece died suddenly has had pioneering treatment to shock her heart back to life it it stops. Michelle Griffiths, 41 and her 18-year-old son Danny have had tiny devices – called defibrillators – fitted into their chests.
Today, Michelle appealed for anyone who has lost several relatives suddenly in unexplained circumstances to contact a new clinic at Manchester Royal Infirmary which aims to identify people who have inherited fatal heart conditions. It is the first of its kind in the north west.
Initially, the deaths in her family seemed unconnected. But doctors believe there could be a genetic link into a heart abnormality which causes sudden death syndrome.
Michelle's sister Patricia died, aged 22, in 1998, after suffering from fainting fits and epilepsy.
When a second sister, Carol, 20, suddenly collapsed and died two years later, during a trip to Blackpool, a post mortem found she had been suffering from a heart virus. Three months later Michelle's brother Stephen, 20, drowned in a swimming pool but it was put down to a tragic accident.
In 1992, a second brother, Phillip, 18, died and doctors discovered an irregular heart rhythm was the cause.
A coroner suggested that Michelle and her two surviving sisters should be tested for heart problems. But in 2000, Michelle's niece, Vicky, then 13, started to have fainting fits. Weeks later, she came home from school feeling unwell and died a few hours later. A coroner told the family that Vicky had an irregular heartbeat too. Michelle said: "It got so I dreaded answering the phone in case it was someone with more bad news. I shut down.
"After my sisters died, people said we were an unlucky family. But when my brother died I started to think we were cursed. I just couldn't think about it."
She refused to accept the all-clear she had been given, fearing for her sons Danny and Lee, 22.
Michelle carried out her own extensive research into sudden death syndrome and after reading information from the organisation Cardiac Risk in the Young, she realised that what had happened was typical of the condition.
She said she found out that it was common for the syndrome to be mistakenly diagnosed as epilepsy – or drowning.
Michelle and her sons went back to her GP for more tests. Lee, 22, was given the all clear but a problem was identified in her and Danny and they were given beta blockers.
Heart expert Prof Clifford Garratt, said Michelle, a sales administrator from Preston, should have a defibrillator fitted which would re-start her heart. And after suffering blackouts, Danny, a joiner, underwent the same procedure in June.
Michelle said: "It was only a two-hour operation and it has given me back peace of mind.
"At first I could feel the weight of the defibrillator if I leant forwards but now I hardly think about it.
"I have a special card to show people if I go to the airport because I can't go through the scanners and I have to check my travel plans with a nurse to make sure I'll be near a hospital. Otherwise, my life's back to normal."
Clinic's vital role
People from across the north west can ask their GP to refer them to the potentially lifesaving new clinic.
The genetic arrhythmic clinic is one of the first of its kind in the country.
Long QT, Brugada syndrome or genetic arrhythmia syndrome sufferers can experience black-outs, collapses or awareness of rapid heart beats.
Prof Garratt, who set up the clinic, said: "Not surprisingly, the possibility that there might be a serious heart condition in the family can be very worrying for everyone and it is crucial to get the correct diagnosis.
"If there is a positive diagnosis the doctor will need to discuss the implications in detail with the patient and often their family, which can be difficult in a busy clinic."
As well as advising patients on risk and preventative treatments, the clinic will have genetic counsellors who will help patients research their family tree and identify other people who may be at risk.
Dr Kay Metcalfe, consultant clinical geneticist at St Marty's Hospital, said, "We know that too often families with genetic arrhythmias are not being diagnosed and that 'at risk' family members may not be referred for cardiac and genetic investigations."