When Sienna was born in June 2017 she was starved of oxygen during delivery and was born with no heartbeat and wasn’t breathing. She required 28 minutes of resuscitation. At seven days old an MRI scan revealed Sienna had severe brain damage and two days later her parents, Sarah and James, switched off her life support machine. At 11 days old they took Sienna to Little Havens for end of life care.

However, day by day, Sienna’s condition improved and at four weeks old Sarah and James were able to take Sienna home. Sienna has cerebral palsy and is registered blind. She requires 24/7 care. The family continue to receive support from Little Havens

“I’m sure the Care Team love all the children but I genuinely feel like they love Sienna. They’re always so happy to see her and say ‘Hasn’t she grown, look how curly her hair is’ and I know she’s safe there. I don’t ever feel nervous about leaving her at Little Havens.

“Sienna has a whale of a time when she’s there, they do so much with her – taking her into the multi-sensory room, around the gardens, arts and crafts and music therapy. With normal family life you still have shopping to do and housework whereas when she’s at the hospice she gets their undivided attention which she loves.

“Little Havens also put us in touch with EPIC – Little Havens home respite care – and other charities which could help us. They helped us build up a support network.

“I go to Sensory Storytime with Sienna every month. It gives her the chance to experience different textures, smells and sounds. I enjoy them as much as Sienna and I get to meet other families. They might not be in exactly the same position but they can give you different tips and ideas of things you might not have thought about. Sometimes you do feel alone, like you’re the only family out there like this.

“Words can’t explain how grateful we are for Little Havens. We went there for end of life care when Sienna was 11 days old. Now she’s over a year and we’re taking each day as it comes. We don’t know what the future holds but we know Little Havens will be there for us, and that is a huge comfort.”

Sarah, Sienna’s Mum

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Published in 2019