Chester's story

Twins Chester and Rhianna were born at just 26 weeks old and they spent their first year in hospital fighting for their lives. Chester has Cerebral palsy (a lifelong condition affecting his movement and co-ordination) and Hirschsprung disease, which is a rare condition of the bowel. Chester needs around the clock care and enjoys short breaks at Bluebell Wood, especially strolls in the garden.

His mum and dad, Lisa and Ian, tell his story. 

Ian said, “We spent the first few weeks of the twins’ lives at Chesterfield hospital before we moved to Sheffield’s neonatal ward. The doctors could tell straight away that Chester was struggling. He spent most of his time on a ventilator to help him breathe, and in December he was diagnosed with Tracheobronchomalacia, which meant his airway was weak and at risk of collapsing. While he was at hospital it collapsed three times, and he had a cardiac arrest. At one point it took 15 minutes to resuscitate him. We didn’t realise at the time, but later we were told that that is what caused his brain damage. 

“We spent exactly a year in hospital with Chester before we were finally allowed to take him home. There were so many times when we thought he wouldn’t survive – at one point he was even given his last rites – so when we first came home, it was terrifying. He had been surrounded by doctors and nurses for over a year, and it was daunting to be on our own as parents. Thankfully, none of the terrible things we thought of actually happened, and we spent our time getting to know Chester and managing his condition.” 

Lisa added, “Ian and I decided to quit our jobs to look after Chester and Rhianna full time. We were both carers for the elderly, but we never imagined caring for our own children like that. Chester is almost completely deaf and has very poor vision, so we are his eyes, his ears, his everything. Our focus is always on the twins. It can be exhausting, but we wouldn’t have it any other way.” 

In 2017 Chester’s Community Nurse came to see the family at home, and she could tell that Lisa and Ian were tired, so she arranged for them to visit Bluebell Wood. Ian said, “The first time we visited it was a really hot, sunny day. Chester and I were by the window overlooking the garden. He looked up at me, and I just remember crying. Not because we were in a hospice, or because I was afraid, but because I felt safe. I knew that whatever happened to Chester in later life, he’d be looked after at Bluebell Wood.” 

Lisa added, “Everyone is so friendly at the hospice. Usually when we go on holiday it’s exhausting, as we’re constantly having to think about Chester’s condition, but at Bluebell Wood we are so relaxed. Ian and I get the best night’s sleep and Chester is comfortable too. The Care Team do all the little things that we do at home to make him feel safe, like putting on a film and dimming the lights, it makes such a difference. 

Chester is now 14 years old and his needs have changed over the years. He has a tracheostomy to help him breathe, which requires regular cleaning, and care.  

“As Chester has such complex needs, he can never be left alone, Bluebell Wood is the only place we can go which has everything he needs.”  

The family enjoy short breaks at the hospice and Chester is able to have hydrotherapy sessions.  

“Getting him in the water is wonderful as it is so beneficial for children with Cerebral palsy. Other facilities cannot offer this due to his tracheostomy,” said Ian. 

The family also now benefit from support by the Bluebell Wood transition team who work with young people (between the ages of 14 and 25 years) by managing their care, educational and social needs. Part of this includes providing youth group activities which Chester likes to attend.   

Ian said, “The transition side of things is all very new to us, so it’s great to have that extra support now that Chester is older.” 

Chester’s twin sister, Rhianna loves coming for short breaks and takes part in as many sibling support activities as she can, where she can socialise with other brothers and sisters of children supported by Bluebell Wood. 

Ian and Lisa also join in with parent group activities at the hospice. Ian said “We have recently discovered yoga classes and it’s honestly been life changing. We now go twice a week and it’s been so great for my mental health and wellbeing.” 

Ian said, “We have now been supported by Bluebell Wood for eight years and have seen the challenges everyone faced with COVID and recruitment but can see the positive things happening with new staff and training.  

“During our recent stay, we had new carers and nurses looking after Chester and were a little anxious about this beforehand, but it was brilliant! 

“The new staff were so good that I felt the need to call the Head of Care afterwards to tell her how pleased we were with the stay, it was really quite special.”   

Ian added, “Coming to Bluebell Wood has always been like a weight off our shoulders. Lisa and I are both realistic about Chester’s future, but we know that whatever happens to him we have a plan, and somewhere we can go where he’ll be looked after.” 

“Please continue to support Bluebell Wood, it’s so important that the service continues not only in the immediate future but far beyond.” 

We sat down with Ian to talk about Chester and the support the whole family have received from Bluebell Wood over the years.

Watch the video to find out more.