Newborn died after tragic brain tumour diagnosis at 9 days old

-Credit: (Image: Reach Publishing Services Limited)
-Credit: (Image: Reach Publishing Services Limited)


A Cheshire couple lost their daughter at just seven weeks old after being diagnosed with a brain tumour. Niamh Knowles was diagnosed with a brain tumour aged just nine days old.

She was the first of four daughters born to Lucy and James Knowles from Warrington. Eleven years later, the couple and daughters Orlaith, eight, and Meabh, six, will be taking part in the Claire House Lantern Walk on the Wirral in her memory.

“Niamh was born with a full head of hair and was absolutely gorgeous,” said primary school teacher Lucy. “We were so proud when we welcomed her into the world. I remember holding her when she was first born and promising her all these things we’d do together.

“Everything was fab. But when she was about nine days old, she had a big crying fit and looked like she’d stopped breathing, so we called for an ambulance.

“We were told she’d been having seizures and she was transferred to Alder Hey. I remember a doctor taking her chart and, as I looked at him through the window, he had his head in his hands. We knew it wasn’t good news.”

Lucy and James Knowles with daughters Orlaith and Meabh.
Lucy and James Knowles with daughters Orlaith and Meabh.

Niamh was diagnosed with a brain tumour and the family made the difficult decision to turn to palliative care, taking Niamh to Claire House. The couple spent four weeks at the hospice with Niamh before her death.

“We obviously couldn’t do everything we’d planned, but Claire House organised for us to take her to Chester Zoo”, Lucy said. “They gave us privacy, but they were there if we needed them. We’ve got some beautiful photos from that day.

“We bought her a big, cuddly orangutan, called Chester, which we took back to the Butterfly suite at Claire House and now keep next to her ashes.”

Niamh’s family used the Butterfly suite at Claire House – a private, comfortable room where a baby, child or young adult can rest as an alternative to a funeral home. Lucy said: “We filled her room at Claire House with all her newborn gifts and the team were so respectful, knocking to enter her room.

“For us, it meant we could be together as a family. We had relatives in Australia, New Zealand and California at the time, so they all flew over and came to the hospice. Claire House looked after us and fed us – and that brought us all together to make forever memories.

Lucy and James Knowles with daughters Orlaith and Meabh.
Lucy and James Knowles with daughters Orlaith and Meabh.

“We had handprint canvases, plates from The Potting Shed, and they threw a party when she defied all odds and made it to one-month old.”

Lucy added: “We had a few miscarriages and then our baby, Harriet, was born too soon at 21-weeks,” explains Lucy. “I don't think I could have got through that time without Claire House and the group counselling.”

The family will be taking part in Claire House's annual Lantern Walk on October 12. The charity expects 1,000 people to walk the 6km route from Seacombe Ferry Terminal to Vale Park, New Brighton, and back.

Lucy added: “Now we have our Rainbow Babies, Orlaith and Meabh, they will make sure Niamh’s legacy lives on by doing things like the Lantern Walk for Claire House. The girls want to do the Lantern Walk again this year to remember their sisters because we miss them.

“They love the fact that it’s a nighttime walk because that’s when we say Niamh and Harriet come out. They’ll look up and say, ‘There’s the brightest star, that’s Niamh!’ It’s lovely because when we were on the Lantern Walk last year, they keep pointing out the brightest stars.

“As a family, we’ll always try to raise money to help Claire House because they were so brilliant at caring for Niamh and all our family in her short, precious life.”

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