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Chester and Rhianna
Chester and Rhianna were born at just 26 weeks old in 2009, and they spent their first year in hospital fighting for their lives. Chester has brain damage and Hirschsprung disease, and now visits Bluebell Wood for short breaks. 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 and look after Chester and Rhianna full time. We both used to be 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 have to be 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 went 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, “After visiting the hospice for the first time, we couldn’t wait to stay overnight. Everyone was so friendly, and we fell in love with the place straight away, especially Rhianna. She said it was better than staying in a hotel! We just felt so relaxed - Ian and I got the best night’s sleep we’d had in years and Chester was so comfortable too. The care team did all the little things that we do at home to make him feel safe, like putting on a DVD and dimming the lights, and it made such a difference.
“We feel so looked after when we come to visit; it’s like we’ve known the care team and the other families for years. It’s such a happy place and Rhianna never wants to leave. She likes to dress up like one of the nurses' and pretends she works there. She even has her own lanyard!”
Ian added, “Coming to Bluebell Wood is 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.”
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