Esme, aged 6, lives in Barnstaple with her mum Claire, dad James, and her brothers and sisters, Adeline, Ebony-Rose, Aimee Lea and Jack. For more than 5 years, the family has been supported by the team at Little Bridge House.
Here, Claire shares their family’s journey with Little Bridge House, from their initial referral through to the ongoing support they receive, and the difference it has made to them all.
For Claire and her family, life changed in many ways long before they had ever heard of Little Bridge House. Their daughter Esme had spent much of her early life in hospital, facing serious health challenges from birth.
“Esme was born in Bristol hospital and had complete AVSD,” Claire explains, a congenital heart condition where there are large holes in the top and bottom chambers of a heart, “Esme also only had 1 heart valve, so they had to split that into 2. She was also born with transient leukaemia and was in complete heart failure. Esme struggled to gain weight and was tube fed for 2 ½ years and needed constant oxygen support for her first year.”
At just 5 months old, Esme had major open-heart surgery and now relies fully on a pacemaker.
For years, hospital became their normal: “Esme has been in hospital more than she has been out for the first 4 years of her life,” Claire says.
During the COVID pandemic, the family faced one of their hardest times. Esme was diagnosed with leukaemia again at 15 months old and had to go through months of chemotherapy in Bristol. Because of restrictions, Claire and Esme were separated from the rest of the family for 7 months.
“We weren’t allowed to have anyone else with us, we had to be separated from the rest of the family,” Claire says. With 4 other children at home, the distance and worry affected everyone enormously, especially one of their youngest children, Adeline.
When Esme finally finished treatment, rang the bell at the hospital and was able to come home, the family was introduced to Little Bridge House by their community nurse who arranged an initial visit for the family.
At first, Claire felt unsure: “You don’t know anything about a hospice unless you’re in that position, it was quite daunting.” But that feeling quickly changed after their first visit.
“We went in quite scared and worried, but everybody there was so lovely. They put our minds at ease,” she says. “They couldn’t do enough for us, not just for me and James, but for the whole family.”
From that moment on, Little Bridge House became a vital source of support for the family. The medical and emotional care Esme receives is hugely important, but for Claire, it’s the way the hospice looks after everyone in their family that really stands out; “They ring up and find out about all of us,” she explains, “They don’t just help Esme, they ask about the other children too.”
That support has made a huge difference. Claire’s daughter, Adeline, struggled after being separated from her mum, dad, and sister for such a long period during COVID, as her parents had to take turns sitting with Esme and were not allowed to be together. This experience left Adeline feeling withdrawn and led to ongoing challenges; “The Sibling Support Team have been absolutely incredible with her” Claire says. “They know her, they understand her, and she feels at ease with them.” One member of staff has become especially important to Adeline, “she’s like my big sister, she’s amazing, she’s wonderful.”
The hospice has also helped Claire find support for her other children when they’ve needed it, including guidance for her son’s mental health and help with school challenges for Esme.
For Claire herself, Little Bridge House is a place where she can finally let go of some of the pressure: “You just go in and share all your worries, it’s like a de-stressor,” she says. “I don’t stop talking when I’m there. I share everything, and when I leave, it’s such a relief.”
She describes how the Care Team genuinely listen and care.
You never feel like you’re a burden, they want to help. And if they can’t, they point you in the right direction
The family also finds comfort in meeting other families during their stays who understand their situation without needing explanations. “You don’t have to tell your whole family story,” Claire says. “They just get it.” Friendships have grown naturally, offering another layer of support on both the good days and the difficult ones. “If 1 parent is having a bit of a bad day, a bit upset, you just understand and you know the right things to do and the right things to say because you’ve been there not long ago and you’ll probably be there again another day, so it’s really nice that you get to spend time there with other families.”
Over time, Little Bridge House has become somewhere the whole family feels at home. They stay for week-long breaks around twice a year and visit regularly for day visits when offered to them as they live so close.
It’s a home from home. As soon as you walk in, you feel like part of the family
Esme certainly feels that way. Every visit begins the same way: “I’m home, I’m back, I’m here,” she says, before kicking off her shoes and running in to greet everyone.
Even Claire’s eldest son, enjoys going: “We all love going to the hospice, even my son who is 17 now, came again recently and loved it and became like a small child again, running around with the others and going to soft play. So even he gets to unwind and de-stress and is able to chat with the sibling team as well.”
Thanks to the support they’ve received, the family has also been able to enjoy special occasions together organised by the team at the hospice: “Last Christmas we were asked to turn the Christmas lights on in Barnstaple, it was absolutely amazing!” Claire says. “Esme and Adeline were so excited.”
There was also a special opportunity just for Adeline who was invited to decorate the Children’s Hospice South West Christmas tree at Michael Morpurgo’s farm: “It made Adeline feel so special and it was so nice to have something just for her,” Claire says.
For Claire and her family, Little Bridge House is more than just a place, it’s somewhere they are understood, supported and able to spend precious time together.
And, as Esme so proudly says each time she arrives, it’s a place they can truly call home.