We bonded over worst tragedy but now want to help others
EXCLUSIVE
TWO mums who bonded at their sons’ gravesides on Mother’s Day are lobbying the Government to boost research on a cure for sudden unexplained death in childhood.
While mothers across the UK were celebrating with their children on March 10, Clare Pitts, 50, and Julia Rogers, 42, were placing flowers for their boys, Harry and Louis.
The complete strangers exchanged a few supportive words – then realised both their sons had died from SUDC, which kills up to 50 children in the UK each year.
Clare, whose boy Harry was 13 when he died in July last year, the day after celebrating his grandad’s
80th birthday, says: “He was fit and healthy. He loved playing football, swimming, playing rugby for London Irish and spending time with his family.
“It’s impossible for other people to understand what it’s like to go through something like this. No one wants to be part of such a community – which is why meeting Julia was such a godsend to me. No parent should ever have to go through the death of their child alone.
“The grief and trauma is so lonely but I know I can share that with her and we can both help each other. When we started talking in the cemetery and I realised that she had been through the same thing as me, it was as though we were meant to meet, to be there for each other.”
Even now, Harry’s death is impossible to fathom for Clare and husband Ben, 48, an accountant with whom she also has son Jonny, 16.
“We’d had such a lovely day celebrating his granddad’s birthday at a local rugby club,” she says.
“Harry was in good spirits and when we came home, he went to play on the X-Box before coming down for a drink of water and saying goodnight.
“We were meant to be going the following morning to celebrate another family birthday. Harry was usually the first up, so it was strange he hadn’t come downstairs.” Ben went upstairs to
No parent should ever have to go through the death of a child alone
CLARE PITTS ON SUDC’S ISOLATING NATURE
like Harry up and found him unresponsive. Despite attempts to perform CPR, it was too late to save him. Instead of ringing our family to sing Happy Birthday, I had to tell them that Harry was dead,” says Clare, a consumer relations manager for a food company who lives in Sunbury-on-Thames, south West London.
"We feel utterly numb as a family. SUDC is shocking and rips families apart. Julia knows exactly how I’m feeling about it.
"Friends can’t properly understand how it feels, the utter numbness and emptiness, which is why despite only knowing her a few months, it means everything to me. Now we want to do everything we can to try to raise awareness and increase research into this terrible condition, to try to stop it.”
Julia lives in Shepperton, Surrey, with husband Christian, 45, a police officer, and their daughter Thea, nine. She found her boy, Louis, dead in bed in June 2021, aged 22 months.
And she could not believe it when she and Clare shared their stories. “It was extraordinary,” she says. “We started talking and discovered that both of us had lost our boys to SUDC. We lived just minutes apart from each other.
“We have a wonderful family and friends who loved Louis and support us. But the difference with Clare is she has shared what we have gone through. It’s the worst club, which nobody wants to join, but the friendship with her has helped me feel much less isolated. “We can talk about things that can’t be discussed with parents who aren’t bereaved. I love getting to know Harry through Clare and sharing my memories of Louis. We met up for coffee two days later and we’ve been firm friends ever since.”
Louis had been poorly in the morning on the day he died but had perked up during the afternoon. Julia, a marketing manager, says: “I put him to bed. But I realised, an hour later, I hadn’t heard him shuffling through the baby monitor.
“I went up to check up on him and to my horror he was unresponsive.
“We were beyond devastated to lose Louis. He’d been such a longed for and loved baby.
“When I met Clare, I felt a sense of solidarity with her, as she’d gone through the same thing we have.”
Genetic testing revealed Louis had a gene deletion associated with epilepsy, which possibly caused a seizure. But he was deemed to have died from SUDC.
Clare and Ben have no clues at all as to what caused their son’s death.
“Nothing has been picked up in tests since,” says Clare. “Doctors say it was probably a seizure but it’s devastating that we don’t have any proper answers. It’s shocking that this can happen at this age to children. But two children a year in Harry’s age group in the UK die in this way.”
When the mums met, they also discovered that eight days later, on March 18, they were both due to join a group of mothers, representatives from charity SUDC UK and medical professionals on a trip to Parliament, where Tory MP Kwasi Kwarteng had vowed to back their campaign. In his speech, Mr Kwarteng said: “There can be no more serious subject for an MP than SUDC.”
SUDC UK said: “All the exposure about cot death in the 1990s led to an 80% reduction in deaths and we want that for SUDC, too.
“More children die by going to sleep and never waking up than in traffic accidents, fires or drownings.”
I went up to check up on him and to my horror he was unresponsive
JULIA ROGERS ON FINDING LOUIS DEAD AT 22 MONTHS