A heartbroken mother’s experience of losing her child to SADS

On the morning of 06 September 2014, the heart was ripped out of Alice Conroy’s family when her son John died completely unexpectedly from Sudden Adult Death Syndrome (SADs) at the aged of just 21.

Alice recalled how she found John unresponsive in his bed on a Saturday morning. A trained nurse Alice immediately started CPR on her son. Tragically however it was too late, John had died in his sleep.

“I was a nurse, I thought I knew everything when in fact I knew nothing,” Alice said.

The ambulance arrived within minutes and John was taken to Blanchardstown Hospital. When his death was confirmed Alice said she was in complete shock and that shock was to continue for months to come.

As John was someone who was always quick to help others his mother offered his organs for donation to see if they could be used to save another life. However, she was told that because he had stopped breathing for some time his organs could not be used. That was when it hit me that John wasn’t coming home, Alice said.

“I just couldn’t believe what I was hearing, it was pure disbelief…not wanting to acknowledge that John was gone.”

The trauma of finding her boy that morning stayed with Alice, he had simply gone to sleep that night and never woke up. Just a few days previously he was planning his future and now his heartbroken family was faced with planning his funeral.

On autopsy John was found to have hypertrophic cardiomyopathy, a condition where there is an increased thickening of the heart muscle making it more difficult for the heart to pump blood around the body. Her two other children were screened for the condition and thankfully they were not affected.

A student at IT Carlow John was due to return to College after the summer break to start the final year of his BA degree in Sport, Business Management.

John or ‘Jonroy’ as he was known by his many friends was larger than life. A talented sportsman he played hurling and football for Castleknock GAA in Dublin at junior level. He also played under 19 interprovincial for Leinster Rugby and under 20 for Connaught in the prop position. He was also the assistant coach to the IT Carlow Ladies College Rugby team.

John packed a lot into his all too short life, he travelled to the US on a J1 Visa and spent time in South Africa with a charity building bathroom facilities for a girls’ school.

John’s kind and gentle manner won him many friends a number of who travelled from abroad to attend his funeral. Alice recalled that the one thing she heard again and again at that sad time was “John was my friend.”

After his funeral John was escorted out of the church with his family walking behind him. It was our turn to support him, he was always a prop for us, and he continues to be to this day, Alice said.

Now entering the fifth year without John Alice said she thinks about him every day and “time means nothing.”

“It is still very difficult. It has taken time to recover from the shock and the absolute bewilderment of losing John,” she added.

The first year was lost to shock and in the second year Alice said that nothing really changed.

“We were in a really sad place, we were broken. The third year we knew he was never coming back and last year we were coping a little better. This year we are living the reality without John, it is still very hard. The reality is that he is not with us.”

“The awfulness of finding him and going into his room has lessened,” she explained.

Alice said she gets comfort from the kindness of others and the support she and her family have received from so many people.

“We have photographs, we have everything of John’s, but we don’t have John,” she said.

It is estimated that approximately 100 young people and children die in Ireland every year because of SADS.

Alice attended the Irish Heart Foundation’s SADs Support Group and said the advice and support she received from other mothers who had also tragically lost children to SADs was “extremely helpful.”

The SADs Support Group is for families who have lost a loved one or friend to SADS. The Group is run by people who have suffered such a loss and is supported by the Irish Heart Foundation.

On February 14 the Irish Heart Foundation is holding its annual fundraising campaign. This includes a national bag pack at Dunnes Stores nationwide and The Perfect Match.

The money raised through this campaign will help the Irish Heart Foundation deliver life-saving programmes like free CPR training, free community heart health checks and support groups for people affected by heart disease and SADS.