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

YOURS (UK) - - Contents - By Katharine Wootton

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

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