Est. read time – 7-8 minutes
A mum whose son had a congenital heart defect but defied the odds to live until he was eight says she will forever be grateful for the ongoing bereavement support she receives from East Anglia’s Children’s Hospices (EACH).
Kyra Welch attends monthly groups at The Nook, as well as having ‘invaluable’ counselling sessions, and says EACH has become a pivotal part of her life since son Kaiden was born in June 2013.
He was diagnosed with Congenital Heart Disease (CHD) before birth and had open-heart surgery just three days after being born.
Despite his condition, he loved life and was a happy, clever and inquisitive schoolboy, surprising medics by living until he was eight and a half.
It was only towards the end his health took a turn for the worse, and Kaiden sadly died in October 2021.
Ever since, Kyra has become a dedicated champion of EACH, helping organise four black-tie balls that have collectively raised around £50,000, and she remains immensely grateful for the support she receives at The Nook.
“To be honest, I don’t think I’d be here now without it,” said the 31-year-old, who is married to Jordan and lives in Wicken Green, near Fakenham.
“Our sessions reassure me I’m not the only one, and I still feel just as strongly about coming to my bereavement group now as I did in the beginning.
“We were nervous and hesitant to start with, and I worried about the prospect of being in a room full of grief. I didn’t feel I had the tools to deal with such overwhelming sadness.
“In reality, it’s the exact opposite, and although everyone’s united by the same pain, we experience it in different ways.
“I try not to bottle up my emotions, but coming here gives me an outlet – an opportunity to talk to people who have experienced a similar thing.
“I have my own support network, but, much as everyone means well and tries to be empathetic, it’s hard to truly understand unless you’ve been through the same.
“I feel so grateful to have something like this, and hearing people’s stories is comforting and reassuring.
“It inspires me to continue, to get up each morning and try and make the best of my day.
“It’s a safe space, and we can be as open and honest as we want.
“No-one judges us, and there’s never any pressure to talk. Equally, no-one looks at you strangely if you get upset.
“Even though we didn’t visit either Quidenham (EACH’s former Norfolk hospice) or The Nook with Kaiden, I love coming here because it’s somewhere special to remember him. It helps keep his memory alive.
“It also gives us a chance to quietly reflect on the way home. Often, we don’t say anything – we’re alone with our thoughts – and that feels right.”
Kaiden’s condition was diagnosed after 11 months, and it was at that point Kyra and Kaiden’s dad, Kieron, were contacted by the team at EACH.
They were told surgery was out of the question, and the medics had no idea how long he would live for. It could be months or years.
“I remember my legs buckling and ending up on the floor when they delivered the news,” said Kyra.
“We knew he wasn’t well, but his condition was more complex than we thought. His veins had narrowed, and there was nothing they could do.
“Our families came to visit him in hospital, dropping everything as soon as they realised the severity of the situation. Everything was a blur.
“However, we eventually went home, determined to do everything in our power to give him the best life possible.
“It became our mission to create memories together, and we were blessed to have eight and a half years – far longer than the medical people expected.
“Despite his health, Kaiden had everything most children have. He went to school, had friends and lots of fun.
“Essentially, it was a normal childhood, and, although we never actually went to the hospice during his life, we appreciated the fact help and support was only a phone call away.
“There were always things we could do and attend, without any pressure, and I can’t stress enough how grateful I was to have them in my corner.
“It continued throughout his life and made such a difference.”
Things started to go downhill shortly after Kaiden’s eighth birthday, and everything came to a head one evening during a trip home from Norwich.
“I was driving, and Kaiden suddenly said ‘I’m dying – my heart’s stopping’,” said Kyra.
“We managed to get home, and I’d rung ahead so an ambulance was waiting for us.
“The paramedics tried to reassure me, but I knew something was very wrong.”
Kaiden was eventually allowed home but constantly looked drained and weak, getting quieter and quieter.
“Then, at other times, he was almost delirious, saying odd things because of the medication he was on,” said Kyra.
“He was going downhill, and we went back and forward to hospital.
“The medics wanted him to stay, but it was the team from EACH that stepped in and made it possible for him to come home – Kaiden’s wish.
“They helped me get him settled here, where he belonged.
“Shortly before he died, Kaiden sat up in bed and said ‘I love you’.
“He had a drink and then laid back down, snuggled in my arms and slowly passed away. It was very peaceful.”
Despite his short life, Kyra looks back with huge love and fondness and describes Kaiden as “pure sunshine”.
“He was such a happy, smiling little boy and also very clever,” she said.
“He was like a sponge, constantly absorbing information, and we used to call him our ‘Mini Attenborough’, because he loved watching wildlife programmes narrated by Sir David Attenborough.
“He was wise beyond his years with an old head on young shoulders.
“He was social, loved meeting new people and wasn’t scared or fazed by anything, which was incredible given the severity of his condition.
“Kieron and I were always very open about it and never hid anything. If ever he asked me a question, I’d always give him an honest answer.
“His classmates at school knew, too, and I remember one child saying to him ‘you’re going to die soon’.
“Thankfully, he dealt with it well, but it was obviously going round in his mind.
“One day, out of nowhere, he asked me what heaven was like and said he’d like his ashes scattered on the top of a mountain.
“It caught me off-guard, but when the time did eventually come, we made sure we honoured his wishes and still make an annual trip to that spot on Snowdon.”
Kyra says EACH has played a crucial role in helping her navigate her grief – something too often a taboo in everyday life.
“People don’t like talking about death, especially that of a child,” she said.
“When Kaiden died, I had hundreds of messages on my phone. Literally hundreds, not to mention countless cards and bunches of flowers.
“People mean well and have the best intentions, and I appreciate it’s hard to know what to say in the moment.
“Lots of people would say ‘I’m sorry’, but that’s something I never understand. It’s not like they’ve done anything wrong or have anything to apologise for.
“It’s a week or two later – or after the funeral – you really find out who your friends are. That’s when you need the support most, when you feel most lost and alone.
“For those messages to suddenly dry up and stop coming through feels hurtful.
“In contrast, my best friends never forget, and they’re always talking about Kaiden.
“They remember him, keeping his memory alive, and they’re the ones who have helped me adjust to my new normal.
“I really appreciate that continuous support, rather than people getting in touch at the very beginning because they feel it’s the right thing to do. Perhaps to make themselves feel better.”
Kyra has chosen to share her story because she wants to help open a conversation about grief.
She says people do not know what to say or fear saying the wrong thing.
“Someone recently made a comment along the lines of them expecting us to be over our grief, four years on,” said Kyra.
“Or people will say something like ‘it gets easier with time’ or ‘time’s a great healer’ or ‘everything happens for a reason’.
“Actually, for me, it just gets harder because as each year passes, it means I’ve gone longer without seeing and holding Kaiden. Another birthday, another Christmas.
“I just want people to treat me normally, rather than tiptoeing around me because they’re scared of upsetting me or saying the wrong thing.
“People are worried about mentioning Kaiden. They avoid saying his name, but that’s the exact opposite of what I want.
“I don’t want people to forget him and stop talking about him. I want to talk about him forever.”
Kyra says she has good days and bad in terms in terms of dealing with her feelings.
“In terms of grief, there’s no manual and no right or wrong way,” she said.
“Some people cry and get angry, whereas others just crave normality and want to get on with things as best they can. They go back to work.
“It’s very individual but certainly a journey for us all.
“Sometimes I might have four good days and then break down on the fifth, going back to square one.
“I’m grieving for Kaiden but also grieving for the life he never had, knowing I never got to see him grow up, get married, have children or drive a car. Even now, four years on, it can feel so fresh and raw.”
In addition to their bereavement support, Kyra says daughter Rosalie, five, loves attending sibling groups organised by the wellbeing team at The Nook.
“She enjoys being around other children who have experienced something similar, which she isn’t used to at school,” said Kyra.
“She’s made friends, and she also loves talking to the staff at the hospice, especially when they say ‘I knew your brother’ or ‘I remember Kaiden’. It means a lot to her.”
All of which means Kyra and husband Jordan remain determined to keep supporting EACH. Both speak openly as a way of raising the charity’s awareness.
“I feel so strongly about supporting other families experiencing similar to us,” said Kyra.
“Whether they’re further along in their grief journey or just beginning, we’re so fortunate to have EACH and The Nook.
“It means so much to me, and I know what a difference that support makes.
“It’s directly helping parents and families who probably can’t see how they’re going to get through the day.
“I know what that feels like because I’ve been there. Sometimes just having the strength to open my eyes, breathe and get through the day is a challenge.
“I’m constantly carrying my grief and pain and, although it doesn’t get easier, I’m learning to manage it.
“EACH has been a massive part of that process, helping and guiding us every step of the way, and we couldn’t be more grateful.”
Kyra has recorded two special videos about Kaiden, including one beautifully voiced by her son himself.
