The ECHO went to Zoe’s Place baby hospice to talk to staff there about their vital work caring for children with complex needs
When most of us think of a hospice, we imagine a quiet place, full of sorrow and suffering. Zoe’s Place baby hospice turns these expectations on their head. The building is brimming with warmth, life and love – and you feel it the minute you walk in.
The hospice in West Derby has amazing facilities for its young patients, but it is the staff at Zoe’s Place that make it so special. One person who knows how important the nurses at Zoe’s Place are is Eberley Pines, 39, from West Derby, whose four year old son Jude has complex needs, including epilepsy, severe apnoea and brain stem dysfunction.
“Jude comes to Zoe’s Place to live,” Eberley told the ECHO. “He’s got a life-limiting disorder, and we have to make things special for the here and now. Zoe’s Place helps with that. We trust the nurses to care for him. They know him the way we know him at home.”
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There are 41 members of staff at Zoe’s Place, including 32 clinical staff, all of whom stand to lose their jobs if the Liverpool facility closes its doors as expected at the end of the year. The nurses who work there are proud of what they do and they know how important it is to the families who use Zoe’s Place.
Michelle Wright, who is head of care at Zoe’s Place, has been working at the hospice for three years and says it is a “privilege” to work there. She told the ECHO: “It’s a unique place to work. You never get the connections you get with the families when you’re working in an NHS trust.
“We are a family. We get to know these children so well, and we get to know the families so well. Part of our philosophy at Zoe’s is not to just look after the child, it’s to look after the whole family – the brothers and sisters, the parents, the carers, the grandparents.
“If you have a child with complex care needs or a life-limiting condition, it doesn’t just affect the child, it affects everybody – there’s a ripple effect. And working here is an absolute privilege to be a part of the familes lives, because they’re in such a unique position.
“Such a hard position, but you see what people are made of. The incredible spirit people have that they can still go on in these extreme circumstances. It’s a privilege to work here and get to know these families.”
As well as providing respite, palliative and end-of-life care for babies and children up to the age of five, Zoe’s Place also gives grieving families bereavement support in their specialist Snowdrop Suite. Working with bereaved families is, according to Michelle, the hardest part of her role, but also the most rewarding.
She explained: “We’ve got a nursery bedroom that has the air conditioning to be a cool room, so instead of a child going to rest in a hospital mortuary, they’re able to rest in a bedroom with the cooling system, and we’ve got facilities where the whole family can stay.
“We can make that awful time a little bit more bearable, and that’s what keeps you going. That’s our aim. Stillborn children have rested with us, and what people have said is that what we’ve been able to give them is a life for that child.
“We’ve been able to help them create memories through the families staying with that baby. That’s what keeps you going, because even though it’s extreme sadness, you see how extraordinary people are, and you’re able to make a difference in the worst of circumstances.”
Michelle’s colleague, deputy head of care Michelle Hawkins, agrees. She told us: “For us to be a part of that journey with them and to make things that little bit better for them along the way, that’s what makes it worth it. Anything we can do for them, we will do it.”
Asked how they deal with the emotional demands of the job, Michelle Hawkins explained: “I did worry about that when I came over from Alder Hey. I thought, how am I going to handle that part of the job? But coming into it, it’s the complete opposite.
“It’s sad, but it’s beautiful what you witness. We just get our emotions out in private. We’re there for the parents and the families, 100% whatever they want to do, then me and Michelle just support each other. If you don’t look after yourself, you’re not able to do your job properly.”
Both women say that no matter how long they do the job, they will never be blasé about their work . “You never get used to it,” said said Michelle Wright. “The minute you start getting used to it, your time’s done. You shouldn’t be doing it anymore because children are dying and it shouldn’t be normal.”
Since the shock October 7 announcement that the hospice would be closing its doors, the nurses have gone through an emotional rollercoaster. “We’ve gone from being absolutely devastated, with tears and anger, to being more positive about things, explained Michelle H.
“It’s been in the ECHO every night and our morale is high. We were already a tight knit team anyway, but with everything that’s happened, everybody has come together. Our main concern is our families. That’s all we want to do: help our families, support our families.”
A city-wide campaign is now providing a glimmer of hope. The charity needs to raise a huge £5m in the next month to fund a new home and the city of Liverpool has been pulling out all the stops to try and achieve this, with comedy gigs organised, businesses giving up their takings and a huge range of individual sponsored events held to try and help with the huge fundraising challenge.
The nurses are “blown away” by the support the hospice has received over the past week and a half. Michelle W. said: “Our message is a message of thanks to the people of Merseyside. Obviously we’re not out of the woods yet. And we’ve got a long way to go, and we need to get to £5 million. But all we can say is we are overwhelmed with the support.
“If any city can do it, Liverpool can. And we want to thank the ECHO for all the publicity we’ve had and all the celebrities who’ve reached out in support, and Ian Byrne [the West Derby MP]. And of course the general public. People haven’t got money, and there’s an economic crisis going on and we’re all affected by it. But they’re putting in a couple of quid here and there, and it all helps. It’s overwhelming and we can’t thank people enough. But we do have a long way to go at the same time.”
