Shooting Star Children’s Hospices have been part of Zoë, and her parents, Britt and Adrian’s lives since she was just eight weeks old. With her daughter now 15, Shooting Star Children’s Hospices has been the place her family can turn to for over a decade.
Zoë’s birth was extremely traumatic. She died for six minutes in hospital before being resuscitated and having to have a tracheostomy fitted to help her breathe. Zoë has a genetic bone dysplasia disorder called OS-CS and used to require a tracheostomy to aid her breathing. She was later diagnosed with a rare complex neurovascular disorder, which causes chronic headaches and mini strokes.
“I went to some very dark places”
The family were discharged from hospital shortly before Christmas but weren’t granted any support from their local council, meaning it was solely Britt and Adrian left to look after their baby girl with all her complex needs. “I was slowly and surely sinking under, hardly sleeping and simply terrified something would happen to her. I went to some very dark places.”
During this traumatic time, two nurses from Shooting Star Children’s Hospices came to look after Zoë for a few hours at home. “I’d been having regular panic attacks, and when I walked into the living room, I just collapsed, and they took one look at me and arranged it so we could all come into the hospice to stay for emergency respite. They literally rescued us.
I’m in no way exaggerating when I say they literally saved my life.
“I’m in no way exaggerating when I say they literally saved my life. My GP was so close to sectioning me, but she spoke to the team at Shooting Star Children’s Hospices who said they could help us. We lived at the hospice for three months whilst I recovered, and they campaigned for a care package for us so we could go home. They built my confidence to care for Zoë as well as be her mum.
“I was in survival mode, she’s going to live, I’m going to live and that was it. Then, I remember vividly, one day, during our stay I looked at Zoë and had this unbelievable rush of primeval love, like a tidal wave – and know it wouldn’t have happened had it not been for Shooting Star Children’s Hospices. They took us in, supported us, gave me tea, counselling, and time to recover and heal and realise I can do this. I was broken and they helped me put myself back together again.”
Using every service Shooting Star Children’s Hospices has to offer
Shooting Star Children’s Hospices have continued to be a support to the family as Zoë has grown up. From symptom management, transition from hospital to home (known as step-down care) and short respite breaks for the whole family, to regular counselling and play therapy, Britt has used every service the hospice has to offer.
“Nobody chooses to have a child with a life-threatening condition. And when it does happen it’s like the world’s biggest bomb has gone off in your life and nothing is the same afterward. It takes so much of you to adapt to this new reality, not to mention the amount you grieve for the child you thought you would have.
“I don’t think people can ever truly understand how hard it can be having a child with such complex conditions, but everyone at Shooting Star Children’s Hospices does because they live it with us; the terrifying scary times, when she’s really poorly or if she’s having low self-esteem, who do I turn to? I turn to Shooting Star Children’s Hospices.
Calling on the Government to maintain the vital Children’s Hospice Grant
Earlier this year, NHS England wrote to the 34 children’s hospices in England, including Shooting Star Children’s Hospices, to inform them that the £25 million Children’s Hospice Grant will come to an end this year. Should that happen, hospices will be forced to cut crucial services, such as respite breaks, hospice at home care and end of life care. For Britt, this is simply unacceptable. That’s why she is joining our campaign to call on the Government and NHS England to maintain the crucial grant.
“When your child has a life-limiting or life-threatening condition, they require so much care and so much dedication and I know first-hand that the support simply isn’t there from local authorities. It is a complete postcode lottery. Yet somehow, hospices come in and try to fill that gap. And they do it so well, but only with the right funding, and the right support from the Government. If children’s hospices don’t get the grant, they’ll have no choice but to cut services and that simply cannot be allowed to happen. Sometimes they are the only thing holding families together.
“You never know if someone you love is going to need a children’s hospice. I wouldn’t wish it on anyone, but Shooting Star Children’s Hospices is still one of my favourite places to be. We need to keep hospices like mine funded, we need to keep them operating and we need to keep them safe. Because without Shooting Star Children’s Hospices, I don’t know how I would have coped. They saved my family.”
If children’s hospices don’t get the grant, they’ll have no choice but to cut services and that simply cannot be allowed to happen. Sometimes they are the only thing holding families together.