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. Martin House helped to make this happen.  

At Esme’s 20 week scan, an anomaly in Cecelia’s measurements was found, but following multiple investigations, the results were inconclusive. The family, who are from Otley, West Yorkshire, had begun to renovate their house and were staying with Cecelia’s grandparents, near to Denby Dale, when Cecelia was born in January 2019. It wasn’t until she was born that doctors noticed something was wrong.

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 Barnsley hospital, where she spent the next 22 days. During this time, Cecelia had multiple seizures, the doctor discovered holes on her heart and she needed to be on oxygen for low stats.

While she was at Barnsley hospital, the genetics tests taken at birth were returned, concluding that she had 1.p36, a chromosome deletion syndrome, meaning that part of chromosome 1 was missing. 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 – 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. We’d had so many appointments in hospital. As both our parents were very involved with Cecelia, we decided to sit down and have a meeting with our community paediatrician in August. It was at this meeting that it really registered that she was life-limited and it came as a complete shock to us all.

“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. Cecelia was often more poorly in the evenings, which Martin House were able to notice as they were taking care of her 24 hours a day and could make an assessment based on that.

“We didn’t know what the future would hold, and we’d been told by doctors that much of how things would progress with her was unknown, but based on what they knew, it was suggested she was unlikely to see her fifth birthday. A doctor at Martin House helped us to create an advanced care plan so that we could help to keep her out of hospital - it was the one thing that helped us feel a little more in control by putting a plan together. 

“At the end of September, we’d booked to go on our first family holiday to Cornwall and we were really in need of a break. Martin House put us in touch with Little Harbour Hospice in Cornwall in case we needed any help while we were there. It was small things like this that meant a lot to us, and having the reassurance that we had support should we need it. It was just amazing to get away as a family.

“She was generally well up until just before Christmas, when she started to get a cold. We’d begun to get used to the ‘new normal’. She was following a ketogenic diet to help to treat epilepsy, but in January this was reviewed as she was having a lot of reflux and kept biting her tongue. We were, however, able to celebrate her turning one at the end of January with a birthday party for her, which are lovely memories.

“In February, we came in for an emergency stay for four days as she seemed to be getting worse, but for the duration of our stay, she was a total dream! We’ve always been active as a family and every time we were admitted into hospital, we couldn’t do much with her apart from visiting her bedside. At Martin House, she could enjoy activities and we could relax altogether while working out how to stop her from being in distress.

“The hospice really understands poorly children and can make decisions for families based on what their ‘normal’ is.”

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. 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 were able to make those next steps because we had support from the team around us and we felt reassured because she was near to us. We could relax on the sofas and look out at the garden. It was a relief that we could make decisions here that we didn’t want to associate with making at home.

“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.

“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.”

James and Esme have received support since Cecelia began to stay at Martin House for respite care, and have continued to receive bereavement counselling from Martin House since she died.

“We never really saw Martin House as a hospice. It was just a place we could take Cecelia, where she could have one-to-one care and take part in activities, which was amazing, and it helped us to avoid going into hospital. It really is a home-from-home. They help you to enjoy your child and take the pressure off you. The support we’ve received is absolutely invaluable.”