Benita Davies – West Midlands

County Representative

benitadaviesMy name is Benita Davies. I live in the Halesowen, West Midlands. I had three children, my daughters Lindsey and Nicola, my son Paul. Paul was the youngest.

On 20th January 1999, the day started off as normal – the girls and I went to work, Paul went to college, and their dad was away as a long distance lorry driver. I was working on a hospital ward as an agency auxiliary nurse that afternoon.

I was helping with the meals when my eldest daughter came through the doors with a policeman. My first thought was she’d had a car accident although she wasn’t hurt, or her dad had been involved in an accident on the motorway.

Nothing prepared me for what they were to say; “Mum, it’s Paul; he collapsed and died this afternoon”.

The policeman then told me that Paul had been seen riding his cycle in the school playing fields when he “just fell off and never got up”.

There was a P.E. teacher on the field at the time, the school children called out to him to help and an ambulance was called. Paul was taken to Selly Oak hospital but was pronounced dead on arrival.

He had died when he fell off his bike but the teacher and the ambulance crew tried in vain to save him. I couldn’t understand why he was at the school as he wasn’t a pupil there; but his best friend was and he had gone to meet him. James and Paul were in the Air Training Corps together and were best mates.

Paul’s dad came home that night quite unexpectedly and had to be told about Paul. We then went with the police officer to formally identify Paul. We couldn’t take it in, there was our son laying in a room looking as if he was fast asleep, we couldn’t understand how he could have died, he had never been ill.

A post mortem revealed that Paul had died of a condition called ARVD – Arrhythmogenic Right Ventricular Dysphasia. Paul’s heart muscle had changed to fibrous tissue and fat, “like a time bomb waiting to go off”. The coroner said the pathologist had only seen 1 case in 23 years it was a rare condition. We still couldn’t get our heads round what all this meant and just didn’t know what to do next.

How could this be though; Paul was healthy, he was in the Air training corps, he went flying, camping and they were always out and about. He was training to be a mechanic at college, his dream was to be an aircraft mechanic in the R.A.F. and he had never shown any symptoms of being ill. This news just devastated us all.

The story of Paul’s death was in the local papers, and a man called Roy Ball came round with a leaflet about CRY. I still didn’t think anyone could help us as we were told Paul’s condition was rare. After the funeral and when things were supposed to get back to “normal” I read the leaflet and saw that there were 11 heart conditions that were killers, and ARVD wasn’t on there.

I phoned the office and explained what had happened and they told me that Alison Cox would phone me straight back. This she did and when I told her Paul’s story she said ARVD was now known as ARVC – Arrhythomegenic Right Ventricular Cardiomyopathy – and the condition was not rare at all. I was then asked to get my family screened as this was a hereditary condition, something that had not even entered our minds.

We were screened at our local hospital – my daughters, their dad and me were told we were OK and discharged. We started to rebuild our lives as best we could. Nicola had the chance to go to Majorca for a holiday with her friend’s family – we wanted her to go and enjoy herself (she was 18 the week before Paul died). She hadn’t been there many days when her friends mum phoned and said that Nicola had been taken to Palma hospital with chest pains after swimming.

We were frantic – we hadn’t got passports to even fly out to her. The holiday rep phoned us to say that Nicola was having a lot of tests done due to her losing her brother earlier in the year. We were given a phone number to ring Nicola every day as she had to stay in hospital for a week before being well enough to fly home. Again I turned to CRY, how could this happen after we were told we were fine and what could we do when she came home?

We were asked to get a another referral, this time to St George’s Hospital in London to see Professor McKenna’s team, this seemed to take a life time but eventually we did. We all went down for the day and had loads of test done – ECGs, Echocardiographs, X-rays etc – we were told the results at the end of the day.

The results were staggering – Nicola and myself were diagnosed with ARVC and we were given medication straight away. Lindsey was all clear but she did carry the gene. Their dad was also given the all clear. We were told that we would need to go yearly for follow up appointments and 6 monthly appointments at our local hospital. My 3 sisters were asked to go for tests too, and 1 of them has been diagnosed with ARVC – this disease is a hereditary condition.

Nicola was 23 when she started to show symptoms of ARVC. She started to have dizzy spells on exertion. I spoke to one of the new Cardiologist consultants at our local hospital about Nicola’s condition and that I was worried. She was asked to go and have a treadmill test; but she didn’t get to start the test, she was taken straight to Coronary Care, her heart rhythm was going out of control. She has now been fitted with an ICD; this is to stop her having a cardiac arrest if ever her heart goes too fast and stops.

I don’t know what I would have done if CRY hadn’t been there for us and the thought of losing another child is just unthinkable but if I hadn’t had CRY’s support I would have believed that we were OK after the first family screening.

Meeting other parents who have suffered losses through sudden death syndrome has helped enormously, they know what you feel, they have been through everything you have; knowing you are not alone is some comfort.

I have been asked to be a Representative for CRY, and this I hope I can do well. CRY were there for me when I didn’t know what to do or where to go. If talking about CRY, supporting CRY, saves another family going through the pain of losing a child then I feel Paul did not die in vain.