"She just dropped down. It was a massive shock" - Woman fights rare heart condition which killed her sister at 22

Monday, 23 January 2012 16:19

Nicki Smalley's sister died at the age of 22 from the previously undiagnosed 'Long QT' syndrome. Now she has also been diagnosed with Long QT and is fighting the illness.

The family had not been aware of Long QT syndrome before Nicki’s sister Natalie died in 2001, and were left in shock after she collapsed one night, having seemed in perfect health a few hours earlier. Having undergone further tests to see if the condition was in the family, Nicki, from Penarth, was told she also had the same disorder and a month after her 18th birthday she was fitted with a defibrillator.

The 27-year-old receptionist said: “There didn’t seem to be anything wrong with Natalie. I saw her the night before she died and she was fine, there has been no indication she was ill. We got a call the next day to say she had collapsed and she had been taken to hospital and was pronounced dead on arrival. She just dropped down. It was a massive shock.

She said: “Young people can have heart conditions like myself. We have to keep an eye on things in the family and I make sure my two children get checked every few years.

“But going into cardiac arrest can just happen. So many people do not know about the condition and it could happen so quickly and if you do not have a defibrillator, you can’t help. The ambulance will get there as quickly as possible, but those couple of minutes are a matter of life and death. The ambulance was with Natalie in three minutes and her boyfriend was a nurse and could give her mouth to mouth, but he didn’t have a defibrillator to get her heart beating again in a natural rhythm. It sometimes just takes that little nudge.

“I have managed to raise funds for one defibrillator and am having a meeting with a school in a couple of weeks. We have done lots of charity events and my nan passed away in November and left a donation.

“Hopefully some good can come of Natalie’s death, as it was such an unheard of thing. It was such a terrible thing that happened to my family but knowing the number of people who now know about the condition gives me the best feeling that we have raised awareness.”