It was just before Christmas 2008. We were over 100 miles away delivering Christmas presents to friends and relatives, when the phone woke us at 3.05 am.
"Mum, something terrible's happened. Tommy's dead."
I still have flashbacks to these words five years on. Tommy was my 15 month-old grandson, the only child of my son. Last time I'd seen him two days earlier he'd been fit and well. Barely able to take in this news, we dressed and drove through the night. A nightmare journey, stunned, crying, shaken.
Three hours later we arrived.
My son greeted me, folded me into his arms, his body wracked and shaking with deep man sobs.
"Mum, I just want him back."
It was then my heart broke. What comfort can you offer your child when his own child has died? You cannot kiss this one away or make it better.
The story gradually emerged. That Sunday had been a normal day. Tommy and his dad had gone out and played their first game of football together. At tea time, my son's family had met up with my daughter's family and gone to a local restaurant. Tommy and his 2 year-old cousin had eaten well and the two boys had played around the tables, as children do at that age. On returning home he drank milk, played around the Christmas tree and was put to bed at 7.30pm.
At 9.00 pm he was fine. At 10.30 when my daughter-in-law went to check him she found him face down and 'unresponsive'. As my son tried CPR she rang 999, he was taken to hospital but despite efforts made to resuscitate him, Tommy was declared dead just before midnight. They were allowed to hold and cradle him, talk to him, until they felt able, hours later, to let him finally be taken away.
I cannot say my son and his wife received much in the way of support from official agencies in the UK. The family liaison officer was 'adequate' but vanished off the scene after the new year. They were left to 'get on with it' and but for the support of family and friends, I don't think they would have coped. The autopsy found no cause of death but the paediatrician who met us six weeks later to feed back suggested perhaps 'pneumonia' or 'overwhelming bacterial infection' despite no evidence for these.
In the meantime I came across a USA-based website on Sudden Unexplained Death in Childhood, and there it was. Hundreds of cases of normal, healthy children, suddenly found dead, usually in their sleep. I emailed them. Their co-founder, Laura Crandall, who herself had lost a child in this way, phoned me back. I was warned that in the UK cases like this were rarely recognised as SUDC by medical profession. A friend who lost her daughter 20 years earlier told me her death certificate read 'septicaemia' when in fact, years later it was discovered to be MCAD, as both her and her husband were carriers.
Forewarned we insisted on Tommy's death being attributed to SUDC and the support we have received from this organisation has been wonderful and thanks to them things are changing in the UK. I would also like to thank The Lullaby Trust for their support particularly through their 'Care of the Next Child (CONI) programme.
By Aka. There is a thread for your comments.
http://www.sudc.org/ - 'an answer when there is no explanation'
http://www.lullabytrust.org.uk/ - bereavement support and advice