Tilly has hypoxic ischemic encephalopathy, which means she didn’t get enough oxygen to her brain when she was born. Now she comes to Bluebell Wood with her mum, Rebecca, and her big brother, Gabriel, where she loves meeting new people and relaxing in the spa pool. Rebecca shares their story.

After months of excitement during her pregnancy with Tilly, Rebecca began to notice her daughter was moving less than usual. She went into labour the same day, two weeks before her due date. She said, “I had to have an emergency c-section, and when Tilly was born she came out floppy and grey. She wasn’t breathing, and it took five minutes for the doctors to resuscitate her. They didn’t know how long she’d been without oxygen but by the looks of her first MRI scan 90% of her brain had been affected. She showed signs of seizures and liver and kidney failure. It was overwhelming – I went from thinking my baby was going to be normal to being told over and over again that there was a chance her brain would forget to breathe.”

Rebecca was initially introduced to Bluebell Wood when Tilly was three weeks old, but she didn’t start visiting the hospice until 2018. Rebecca explained, “After Tilly was born, I started suffering from severe depression, and one of my crutches was having her round me all the time. For the first six years of her life I didn’t spend one night away from Tilly, and she missed out on a lot of things, including time at Bluebell Wood. After I’d worked on my depression, I decided to book my very first stay at the hospice. It really was amazing, and I ended up feeling like a spare part – which was good, because it made me realise that even if I’m not right there next to her, she’s still got people looking after her.

“The stays also give me and Tilly’s brother, Gabriel, time together too. It can be hard to work around Tilly’s care at home, but when she’s at Bluebell Wood we can pop to the cinema or Gabriel can have friends over, which is something he was never able to do before. He’s even started going to the sibling group at the hospice and it’s been great for him to talk to children he doesn’t know. For me, even just having a night or two when I can just chill out at home and not think about Tilly’s meds or pads makes a big difference too. Having that taken off my shoulders just gives me time to reboot.

As Tilly has got older, Rebecca discovered she had a lot of problems she didn’t know about at first, but she feels safe leaving her in the hands of the hospice Care Team: “When she was born, the doctors told me Tilly probably wouldn’t live past the age of three. Since then her life expectancy has moved with every birthday, but we have noticed she’s getting frailer. She has oesophageal reflux disease, which means she can’t have anything into her stomach at all or she’ll be sick.

She’s also got a dislocated hip, is registered blind, and continues to have daily seizures. She’s 100% dependant on whoever is taking care of her, but Bluebell Wood knows her – and her needs – really well, and I know that whatever happens in the future we’ve got a plan in place for her.

“Since we started coming to Bluebell Wood, our lives have changed so much. The hospice helps us in so many ways – Tilly gets the care she needs, I get to have a break, and Gabriel can come and play. We’ve made so many friends here and it’s been amazing having this extra help. The only thing is I wish we’d come here earlier – it would have made our lives so much easier!