I recently had the privilege to visit a Zoe’s Place Baby Hospice. Zoe’s Place is LIFE’s daughter charity, set up to provide palliative, respite and end-of-life care for children aged from birth to 5 years old with life-limiting conditions.
There are currently three Zoe’s Place hospices, based in Coventry, Middlesbrough and Liverpool. The very first began in the 1990s, and the most recent (Coventry) opened in 2011.
What is special about the service they provide?
Zoe’s Place is the only organisation in the country to specialise in hospice care for children aged 0-5. It is incredible to think that such a service, what most people would consider reasonable and compassionate in our society, did not even exist until the 1990s. And because they specialise in doing this one thing, they do it very well.
Every child they care for is unique; the most common condition among children at Zoe’s Place is severe cerebral palsy, but other children have serious epilepsy, and others have genetic or chromosomal disorders or combinations of many different illnesses. Most of the children are fed externally via a feeding tube directly into their stomachs; some require oxygen for some or all of the day.
All of the children have very bespoke and special care. The logistics are challenging for high-dependency children who need so much equipment simply to stay alive, but the atmosphere at the Hospice was truly loving, joyful and full of fun. The children have the opportunity to mingle with others of their own age – another benefit of specialising in care for infants.
The Hospice was full of different rooms, including sensory rooms, rooms for play, a room for art and craft, (cot) sleeping rooms, and a bathroom. There was even a parents’ suite complete with kitchen and bathroom so that parents can stay at the Hospice if the child has a life-threatening condition.
One of the rooms that made the most impression on me was the Starlight room, named after a picture of stars on the wall donated by a local artist. This is a room where any children who pass away are placed; it is a bereavement room for the parents as well.
What is special about the Zoe’s Place community?
The Hospice manager remarked that all of the staff there are in awe of the love and sacrifice of the parents of these children. I was struck by how Zoe’s Place cares for everyone involved in the disability of the child – not just the child, but the child’s parents and siblings, who can find it very difficult to cope. Parents can feel exhausted, siblings can feel second-best to the child who always comes first because of their care needs, and they can feel guilty about having these feelings.
I found it so beautiful that the Zoe’s Place staff were selfless enough to be in awe of the parents of these children, and felt privileged to work with them; it was also so beautiful to see parents and carers who were making the choice to love these precious ones despite the pain and difficulty it can bring.
Not only are these parents dedicated, but the staff are too. At the Hospice I visited, the manager told me, all 30 staff could have taken equivalent NHS positions at better pay. It was palpable that this was a community of dedicated and brilliant people that brings special results into what they do.
This dedication is the reason why Zoe’s Place is flourishing and how the team at this hospice went from a building site four years ago to a purpose-built centre for 6 children requiring full-time care. Zoe’s Place receives only about £125,000 per year from the government, when the Hospice I went to alone requires £1 million each year to run. Zoe’s Place succeeds because it is a community initiative and the community is behind them. To me, this showed me how it is community charity that really changes lives.
What is special about these children?
To be in this environment was like stepping into another world. It was very emotional and very humbling. It was wonderful to see how a dedicated team with a love for what they do, a specialised mission, and community-driven, can make waves and is becoming well-established among their local towns and cities.
To see how we can bring joy and love to difficult conditions was a very special experience. Why should these children be treated any differently than any other children? Why should these children not have the same rights and opportunities as any other child?
What is special about these children is the same thing that makes you and I special – our uniqueness, our human nature, the beauty and joy that can come even from a difficult life when we live it in love.
“What can I do to help Zoe’s Place?”
- People can self-refer to Zoe’s Place, but they need to know that this support is out there. Let the word be spread through publicising, through sharing the news of what Zoe’s Place does. Connect with Zoe’s Place hospices on Facebook and Twitter.
- Consider making a donation to support the work of Zoe’s Place, or participating in one of their fundraising events. They rely so much on donations from the public to continue this work.
- Volunteer your time or your talent to help out with whatever they need. Ask to come in to visit the Hospice and see for yourself what makes them special.
Ultimately, the world that we all want to see is a world of love. It was very humbling to see the love in the Hospice; let us honour that by bringing that love with us out into the world to change hearts and transform lives.