When one-year-old Cecelia was diagnosed with a life-limiting condition, her parents, James and Esme, were determined to make sure that whatever the future held, the right plans were made to help to keep her out of hospital so they could enjoy the short time they would have with her. Children’s Hospice Martin House helped to make this happen.
Following a natural delivery and “two lovely weeks at home” with baby Cecelia, one morning, she stopped breathing. Her dad, James, gave her CPR and she was taken to hospital, where it was diagnosed she had 1.p36, a chromosome deletion syndrome, meaning that part of chromosome 1 was missing.
After three weeks Cecelia weaned off the oxygen and was able to be brought home.“We just started to get back on with life as we now knew it”, said Esme, Cecelia’s mum.
But when Cecelia was coming up to five months old, her seizures started to return more severely and Cecelia’s community paediatrician referred her to Martin House.
“At this point, we didn’t really register that Martin House was a hospice,” says Esme. “We just saw it as a nice place to stay and get some support that wasn’t too far from home. I was in denial about her condition and was determined not to label her.”
In August the family met with their community paediatrician, and it was at this meeting that it really registered for Esme that Cecelia was life-limited: “It came as a complete shock to us,” says Esme.
“Rachel, a member of the community team at Martin House came out to visit us, and we were able to visit the hospice, too. Cecelia’s first stay was in September 2019, where she stayed for two nights. We had the opportunity to stay, but we decided to come home to really take the chance to have some respite, knowing she was in safe hands.”
Martin House continued to support the family , helping them create an advance care plan for Cecelia, and even contacting Little Harbour hospice in Cornwall when the family booked a trip to Cornwall in the Autumn.
Cecelia was generally well up until just before Christmas, when she started to get a cold. Although the family were able to celebrate Cecelia’s first birthday in January, she was becoming increasingly poorly, and in February the family returned to Martin House for an emergency stay – over the four day stay Esme describes Cecelia as a “total dream”, enjoying activities and relaxing together.
But a matter of weeks later, while the family were staying with Cecelia’s grandparents, Cecelia wasn’t settling and James and Esme knew something wasn’t quite right.
“We gave her lots of cuddles and we called Martin House as we sort of hoped that we could bring her over and she would make a miraculous recovery there, based on how she’d been when we’d stayed previous. We were advised to give her morphine, to help make her more comfortable as was stated in her advanced care plan.”
Esme bathed Cecelia to help relax her, but shortly afterwards her breathing began to slow, and she sadly died. She was surrounded by people who loved her dearly and her death was very peaceful.
“She’d been uncomfortable, but we never considered she would die so soon,” Esme says. “Our advanced care plan was in place because we didn’t want her to suffer. We had the option to use a cooled cot at home or take her to the hospice, and we chose to take her to Martin House, where we used a cooled bedroom. There wasn’t a better place for us to be.”
“We’re so grateful to everyone who helped to facilitate the best possible death we could have given her. She was surrounded by her family at home, without intervention and it was so peaceful. Martin House made sure everyone involved in her care was informed of her death which was one less thing for us to have to think about.”
Esme can’t speak more highly of the difference that Martin House made to Cecelia’s life. “They have helped our family so much,” she says. “We would never have expected to have needed support from a charity. We’re very self-sufficient so asking people for help was difficult, but it was so comforting that Martin House was there for her and continue to be there for us – I honestly don’t think we would have got through last year without that help and guidance.”
After Cecelia’s death the family planned a five day walk in the Yorkshire Dales to visit places they had been with Cecelia but then the coronavirus pandemic shut down those plans. So instead Esme devised a plan to take part in the 2.6 challenge and complete 26 challenges in a day to raise money for Martin House.
So on the 26th April – the day that Cecelia would have been 15 months old – Esme ran, burpee’d, hand-stood, baked and ate her way through 26 different challenges in her back garden, raising over £8,000 to support the work of Martin House.
“I felt people were cheering us on from the back garden,” says Esme. “We found the day really enjoyable and it was nice to be able to think back and remember Cecelia, on the day she would have been 15 months old – that was really significant for us.”
If you’re inspired by Esme to take up your own challenge to raise money to support Children’s Hospices please spin our wheel of fortune and set up your own fundraising effort