THE parents of a new born baby girl have spoken about the heartbreak of losing their daughter after she died after being diagnosed with tragic brain tumour at just seven weeks old.

Lucy, 41, and her husband James from Warrington said their hearts “swelled with an overwhelming feeling of love” when they first gazed into the eyes of their daughter Nimah.

However, just weeks later, the Knowles family were given devastating news that their little girl had a brain tumour and turned to Wirral’s Claire House for support.

Lucy said: “Niamh was born with a full head of hair and was absolutely gorgeous.

“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.”

Niamh was diagnosed with a brain tumour and the family made the difficult decision to turn to palliative care.

Lucy and her husband James spent four weeks at their local children’s hospice before she died.

Lucy said: “We chose to come to Claire House to enjoy the time we had left with Niamh and it was the best decision we’d ever made. The staff were amazing.

“We obviously couldn’t do everything we’d planned, but Claire House organised for us to take her to Chester Zoo

“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 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.

“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.”

Having the Butterfly team’s support gave Lucy the strength to get through more painful losses.

She said: “We had a few miscarriages and then our baby, Harriet, was born too soon at 21-weeks,

“don't think I could have got through that time without Claire House and the group counselling.”

The couple went on to welcome two more daughters, Orlaith, eight, and Meabh, six.

And it’s Claire House events such as the Lantern Walk, organised by and in aid of the charity, that help keep Niamh and Harriet’s memories alive.

Lucy said: “Niamh was seven weeks old when she died. We can never thank Claire House enough for what they’ve done for our family.

“Because of Claire House, we can look back on our time with Niamh with fondness and happiness. They helped to turn a bleak time into happy memories

“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.”

Claire House Lantern Walk

This year’s Lantern Walk for Claire House takes place at 6.30pm on Saturday, October 12.

Lucy’s family will be among the expected 1,000 people turning out to walk the 6km route from Seacombe Ferry Terminal to Vale Park and back.

Families will walk side by side, carrying lanterns along the way, as they remember or celebrate loved ones, many supported by the charity.

To sign up visit clairehouse.org.uk/lanternwalk. Registration closes October 9, 2024.