Inspired by baby Kira to help others
As figures reveal a rise in sudden infant death syndrome rates we speak to a bereaved grandmother who’s helping to support families and raising funds for research
Like all new grandmothers, Sue Shannon-Jones was overjoyed by the arrival of her beautiful granddaughter Kira, born on a Mothering Sunday weekend. While she was already a grandmother to her son’s children, this was the first child of her daughter and also the first grandchild local to her, with the others living hundreds of miles away. Sue also had the joy of being there when her daughter gave birth to Kira, an experience she described as, ‘incredible and miraculous’.
Eager to do everything she could to help, Sue invited her daughter Danielle
‘I already had lots of plans for what I wanted to do with Kira when she grew up’
and her partner Chris, along with Kira, to stay with her while the couple found their feet in the early days of parenthood. “It was a really special time,” says Sue, 68. “And I already had
lots of plans for what I wanted to do with Kira when she grew up.”
But two weeks after Kira was born, the unimaginable happened when mum Danielle ran into Sue’s bedroom shouting that her baby wasn’t breathing. “As you can imagine it was all a bit of a panicky blur,” says Sue. “I tried to revive her and then my husband took over while I rang an ambulance. Following the ambulance on the way to the hospital I said, ‘I’m sure it’ll be alright now’.”
When they arrived, the doctors did everything they could to bring Kira back, but sadly nothing worked. “The paediatrician had to ask my daughter’s permission to stop trying to resuscitate her, which was so hard. “To hear Kira had gone made me numb and it just felt unbelievable that this thing you see in the papers or on television was happening to us.”
With the family given as long as they needed to stay at the hospital,
‘When I help someone else, I feel that it makes Kira’s short little life worth something’
nurses took photographs of Kira and gave the family a snippet of her hair and a painted footprint.
In the meantime, a post-mortem did not find any cause for Kira’s breathing to stop and the inquest recorded a verdict of sudden unexplained death, something that made dealing with the grief of Kira’s passing even harder for the family.
“I later learned that Sudden Infant Death Syndrome, or SIDS as it’s called in this situation, is fairly common but it does leave you floating as you need something to hang onto to understand why it happened. For my daughter she really struggled to come to terms with it, as did her partner. Then as a grandparent, I felt I was trying to deal with my own grief as well as helping theirs.”
But it was while Sue was looking for more information about this condition that she came across the
Lullaby Trust, a charity dedicated to raising awareness of Sudden Infant Death Syndrome, as well as offering advice and support for bereaved families. Here she found the information that helped her make sense of the situation and over time, made things easier.
As for Danielle, she eventually had another child and despite a worrying pregnancy, gave birth to Aaran a year later, followed by two more children who all know about their older sister Kira, who is still talked about regularly.
Nevertheless, with Kira always in the back of her mind, Sue never forgot how The Lullaby Trust had helped her and when she received an email from them looking for volunteers, she knew she had to go for it.
Since then, she’s been a regular volunteer for The Lullaby Trust’s helpline where she deals with everything from expectant mothers keen to know the best kind of sleeping products to keep their baby safe, to mums who’ve lost a child and feel they’ve no one else to talk to. She also befriends parents and grandparents who’ve been bereaved, too.
“When I help someone else, I feel that it makes Kira’s short little life worth something. It acknowledges that she had a life, even if it was for just two weeks, and it’s her that’s made the difference.
“With those who have lost a baby, they often want to know my story and hear that while it might be pretty awful at the time and never entirely goes away, it does get better and you will survive. They also like to hear about some of the things I do to keep Kira’s memory alive such as making donations to charity in her name for her birthday and Christmas presents. Some of the other grans and parents say that’s a nice idea and perhaps they could do that too.”
Sue also sits on the lay panel for the Trust’s research into causes of sudden infant death syndrome as well as fundraising for this research. Over the years she has run six marathons and undertaken a skydive to raise around £6,000 for the charity.
“It is who Kira gave me the confidence and inspiration to want to do these things and through doing it, I’ve met so many people who understand what we’ve been through as a family. I’m also proud to raise money to fund vital research because while the number of sudden infant deaths has dropped significantly since the Eighties, we still need to know more to stop further babies sadly dying.”
Sue and inset above her granddaughter Kira who sadly only lived for two weeks
Sue’s incredible efforts – including a skydive – have raised much-needed funds for the Lullaby trust