‘Parents who bury their child are in a very small club’

New CRY chairman Tommy Fegan lost son Kevin to Sudden Adult Death Syndrome

Tommy Fegan, the new chairman of CRY (Cardiac Risk in the Young) says he and his family try to console themselves that their son and brother Kevin had no pain when he died at the age of 24 in 2010 from sudden arrhythmic death. This was a result of the electric impulse to his heart stopping momentarily, causing the heart to get into distress.

"Recently, the son of a friend of mine died after years of fighting cancer," says Fegan. "He suffered, is what I say to myself, whereas Kevin was better off. You get into this relativity thing. But, at the end of the day, parents who bury their child are in a very small club, a club that no one wants to be a member of. And you can't get out of it. The best articulation of the nature of that grief was explained to me by writer, Peter Cunningham, who I met shortly after Kevin died. He summed it up by saying, it's like going down into a lake without a bottom. You pass people who have lost their mother or father and far, far down below, are parents who've lost more than one child, maybe as a result of an accident or a conflict situation."

But, as Fegan says: “It still comes back to an individual named Kevin with a personality and his musical tastes and all the things that make up a life.”

The youngest in the family, Kevin, a twin, was one of four siblings. The year before he died he had qualified in music technology from Queen's University in Belfast. He had a job as a lecturer in the Southern Regional College in Armagh.

"My wife Ann was lecturing there as well. In the summer of 2010, Kevin received a scholarship to attend the Milwaukee Irish Music Festival. He came back from that in mid-August. He was terribly excited about what had happened in Milwaukee and wanted to tell me all about it because I'm very much into Irish traditional music. He kept saying to me that we'd have to go down to the pub to talk about it. But we never got to the pub."

New house

A couple of nights after visiting his parents, Kevin was having dinner on a Friday night with his girlfriend in his new house in Camlough in south Armagh. He stopped eating and said 'I'm not feeling well'. Then he collapsed. At the time, my wife had been trying to contact Kevin to arrange the loan of a car to him the next day. We were driving past Kevin's house. My wife had her head down, texting Kevin. From the corner of my eye, I could see an ambulance and I thought it was for the house next door. But Ann said it was for Kevin's. So I turned the car around."

Kevin lost consciousness after collapsing. "We came along five minutes after this happened. The ambulance crew were tending to him. We followed the ambulance to the hospital in Newry. We were in shock. The medical staff were brilliant. They worked on Kevin for about an hour. They kept us informed telling us it wasn't looking good. They were preparing us. Finally, Kevin was declared dead."

While his wife availed of counselling through CRY, Fegan “soldiered on”.

“Seven years later, I’m not sure whether that was the best way. I used to say that counselling wouldn’t bring Kevin back. I sometimes regret [not going for counselling]. I immersed myself in work.”

Retired since 2016, Armagh-based Fegan headed up the North/South Exchange Consortium working on policy co-operation between the two departments of education. "As well as doing my job, I took on a PhD on the subject of Irish Travellers and traditional Irish music. I shouldn't have done that because I've since realised that moments of intense grief affect concentration. I was raising the bar to the highest level of academic study, but, at the same time, I was grieving. Also, I wasn't being fair to the family because studying at that level means you have to exclude yourself. That's what I was doing constantly."

Emotional support

Fegan successfully completed his studies in 2015, having switched to doing a Master's degree. "I had given it five years. I wanted to give more time to my family and to give something back to CRY, even though I didn't avail of their counselling services. Frankly, without CRY, I don't think I'd have made it through. People like Marie Greene who co-founded it in 2002, Dr Deirdre Ward, and Lucia Ebbs, became a big family to us. The emotional support was quite incredible. I didn't want to commit myself to therapy, but I had that sense of people who understood where I was and helped me through."

Having taken over as chairman of the charity from Michael Greene, Fegan's aim is to "strengthen our screening support and research services, raise awareness of the issues and help reduce the number of parents who face that unimaginable and ultimate horror – burying your child".

Fegan has been raising funds for CRY for years. He and his family have availed of screenings through CRY. The organisation sees more than 1,500 people every year in the CRYP (cardiovascular risk in younger persons) Centre in Tallaght Hospital.

“In Kevin’s case, there is no evidence of any inherited condition. That left a question, ‘why did he die?’ The screening and the work that’s done by CRY contributes to local and national research. It could lead towards identifying why sudden adult death syndrome (SADS) happens. Hopefully, one day, there will be a solution.”

SUDDEN CARDIAC DEATH (SCD)
– An estimated 60-80 people aged 1-35 years die of SCD every year in Ireland.
– SCD may occur because of underlying heart muscle abnormality, electrical disorders, or other structural problems.
– In about half of cases, the cause may be inherited.
– Conditions that cause SCD cannot be cured, but if diagnosed, risk of death can be significantly reduced.
– The best treatment for those potentially at risk includes expert assessment, access to genetic testing and psychological support and counselling.
– The CRYP Centre in Tallaght is the only clinic in the country that provides a complete free service.