Parents talk about the heartbreaking loss of their child and how they are keeping their daughter’s memories alive

TWO proud parents and their rainbow babies Orlaith and Meabh will take part in the Claire House Lantern Walk to remember the children they lost too soon.

Lucy Knowles, from Callands, has bravely spoken out about the “heartbreaking losses” her family has suffered, which has left her and her husband James reliant on the support and care of Warrington Children’s Hospice.

Like all loving parents, Lucy and James described looking into the eyes of their “beautiful” firstborn Niamh and feeling an “overwhelming feeling of love.”

Niamh was born on July 27, 2013 and both parents said they couldn’t be prouder of their daughter.

But just weeks into parenthood, the Knowles family received the devastating news that their little girl had developed a brain tumor, and the family then turned to Claire House for support.

Newborn baby Niamh Knowles (Image: Included) “Niamh was born with a full head of hair and was absolutely gorgeous,” explains Lucy.

“We were so proud when we welcomed her into the world. I remember holding her when she was born and promising her everything we would do together.

“Everything was fabulous. But when she was about nine days old, she had a violent crying fit and looked like she had stopped breathing, so we called an ambulance.

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

Niamh, just weeks old, was diagnosed with a brain tumor and the family made the difficult decision to turn to palliative care.

“We decided to come to Claire House to enjoy our remaining time with Niamh and it was the best decision we have ever made. The staff was fantastic.”

Parents Lucy and James with baby Niamh (Image: Included) Lucy, 41, and James, 42, spent four weeks at the local children’s hospice before she died.

Claire House ensured the couple created memories with their daughter that would never fade.

“Of course we couldn’t do everything we had planned, but Claire House arranged for us to take her to Chester Zoo,” says Lucy.

“They gave us privacy but were there when we needed them. We have some beautiful photos from the day.

“We bought her a big, cuddly orangutan called Chester, which we brought with us to the Butterfly Suite at Claire House and which we now keep next to her ashes.”

Niamh’s family used the Butterfly Suite at Claire House – a private, comfortable space where a baby, child or young adult can rest as an alternative to a funeral home.

“We filled her room at Claire House with all her newborn gifts and the team were so respectful that they knocked to enter her room,” says Lucy.

“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 there and came to the hospice.

“Claire House looked after us and fed us – and that brought us all together and created unforgettable memories.

“We had handprint canvases and plates from The Potting Shed and they threw a party when, against all odds, she turned one month old.”

The family has participated in the Claire House Lantern Walk for several years (Image: Included) The support of the Butterfly team gave primary school teacher Lucy the strength to overcome even more painful losses.

“We had a few miscarriages and then our baby Harriet was born prematurely at 21 weeks,” explains Lucy. “I don’t think I could have gotten through this time without Claire House and the group counseling.”

The couple welcomed two more daughters, Orlaith, eight, and Meabh, six.

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

“Niamh was seven weeks old when she died. We can never thank Claire House enough for what they have done for our family,” she added.

“Thanks to Claire House we can look back on our time with Niamh with joy and joy. You helped turn a bleak time into beautiful memories.”

Lucy continued: “Now we have our rainbow babies Orlaith and Meabh. They will ensure 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 Niamh and Harriet come out, as we say.

“They’ll look up and say, ‘There’s the brightest star, that’s Niamh!’ It’s nice because when we went on the lantern walk last year they kept showing us the brightest stars.

“As a family we will always try to raise money to help Claire House because they have looked after Niamh and our whole family so brilliantly in their short, precious lives.”

This year’s Lantern Walk for Claire House will take place on Saturday October 12th at 6.30pm.

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

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

To register, visit clairehouse.org.uk/lanternwalk. The registration deadline is October 9, 2024.