Many of us find talk of death uncomfortable and especially the idea of a hospice. The name with it so many negative ideas of a dark and depressing place where you eventually go to die.
That’s arguably even more so the case with a children’s hospice. No-one wants to contemplate the prospect. Why is that we can’t bring ourselves to talk about it? Because while a children’s hospice does, inevitably, serve as a place where some children see out their final days and hours there is so much living that happens inside a hospice too.
Children and their families receive support from Ty Hafan, based in the Vale of Glamorgan, from birth until the age of 18 but they don’t just simply cut ties after that as the charity continues to support the patient and their family through the transition in to adult services. They offer the transition service because they have often cared for these children their entire lives and the nurses and staff at Ty Hafan have become just as much a part of their family.
Read more: The stories of nurses and doctors who look after people in their final hours
If you simply walk through the doors of Ty Hafan’s Children’s Hospice in Sully you won’t be greeted by hushed tones or grey dark and depressing walls. Instead the brightly-coloured rooms are filled with laughter and chatting.
Since they opened in 1999 they have supported 1,193 children and their families through the most difficult times. As you walk into the hospice you see the colourful handprints of all the incredibly brave children and their families who have received support from the hospice during their 23 years.
There are two types of children who the hospice see during their care – children who have been ill since before they were born or at birth and children who have become unwell during their lives. It really is so unfair that these children are ill before they have had a chance to live but charity staff do everything in their power to not only care for the children and their families but to encourage them to live life to the fullest and to make memories that will live on even if the child is not a physical presence in their family.
The incredible range of facilities means despite being in a hospice it does not feel like a clinical environment. They have music, art, and sensory rooms and a hydrotherapy pool that engage the children to create lasting memories for their families. The centre has recently unveiled their new sensory garden which hopes to provide year-round accessibility for children with life-limiting conditions and their families while they are patients at or visiting the hospice as well as for staff and volunteers.
To memorialise the children who have passed away their names are etched into stones that show just how many lives the charity has touched. The hospice is located by both woodland and also the sea with the pergola which looks out over the water offering a place for children, families, and staff to sit with their thoughts or enjoy time together.
If you ever have the privilege of visiting the hospice and you will hear hear birdsong. In a poignant and beautiful tribute this is actually the name of each child that has died translated using Morse code into the song of the bird which sings the loudest in the month the child passed and is followed by a silence of one second for each year of the child’s life. The song is currently more tjhan two and a half hours long and will continue to grow as future children pass.
My own opinions of dying at a hospice were completely changed after my uncle died in an adult care hospice. You can read about that here. Other than the welcoming building of Ty Hafan the experience of a hospice is never a nice one but is made easier by the staff at the centre who are so kind, welcoming, and funny. Even in the darkest of times it’s nice to have someone to make you laugh when you really need to laugh and to be sad when you need to feel sad.
I spoke to some of the staff at Ty Hafan’s Children’s Hospice who told me about the pain, poignancy, and privilege of working in children’s palliative care. Here are their stories.
Meg Fears, child nurse
Meg’s older brother Greg has been a patient of Ty Hafan for most of his life. Greg has Down syndrome, pulmonary hypertension, and cardiac disease. Greg’s life-limiting conditions meant that he was given a poor life prognosis of just nine years but he is now aged 30. As a family the Fears spent many years at the centre supported by Ty Hafan and it inspired Meg to become a nurse.
“I chose to work at Ty Hafan as I have a unique awareness of what palliative nursing care is. I’ve experienced Ty Hafan from a personal side of our family having care from the hospice and now I have the pleasure and privilege to work at Ty Hafan as part of the nursing team and care for the wonderful children that come here. Ty Hafan has helped us as a family to make so many memories and wonderful times together.”
Meg was just eight years old when she started coming to Ty Hafan and receiving support through the sibling support services. As a young child Meg used to follow the nurses and do lock-up in the evenings with them and used to copy what the nurses were writing in the charts about Greg. She said: “I had always wanted to become a nurse. As a family we were all involved in Greg’s care.”
As a recent edition to the Ty Hafan nursing team, Meg studied paediatric nursing at Swansea University. After an initial placement at Noah’s Ark Children’s Hospital it was always her dream to come back to Ty Hafan.
Meg said: “I had always wanted to come back to Ty Hafan to work because of how tight-knit the team were here. I’m in a unique position that I have seen care from both sides so I have a unique understanding and can empathise with families.
“I’ve decided to come into palliative care nursing at Ty Hafan as I think it’s just so special. It’s so much more than what people may think. There’s so much fun within the nursing and the care that we provide.
“It really is such a privilege to work here – it’s such a fun place. Every day is different – the fun we have with the children making memories and treasuring time with them. It’s all about working with the child and the family to make memories together and to cherish all the wonderful time they have.”
Tracy Jones, head of community services and partnerships
Tracy has worked for Ty Hafan for 13 years and is now responsible for community services which cover all play and therapy services as well as family support services and emotional and bereavement support services too. As a former qualified support worker Tracy had always worked with children and families that were living with complex health needs and life-limiting conditions.
“So I think one of the reasons I was always really interested in working in a hospice and working with children with really complex health needs is I’m a sibling, and adult sibling now – both my younger brothers are severely disabled and have complex health needs and that led me on to becoming a specialist foster carer for quite a while and I looked after children and young people who sadly went on to die and I think that’s where my wish to work in children’s hospices came from really,” she said.
Tracy said that Ty Hafan is a philosophy of care as most of what they offer within the walls of the hospice they also outreach into the community, this is just a building it’s so much more about the people. She said: “The experience of working here is the greatest privilege of my working career without a doubt. The opportunity that the families give us to walk alongside them to share their most precious moments to share their very precious children with us is something that every single day I feel incredibly grateful for.”
Abi Tong, complementary therapy practitioner
Abi has been working at Ty Hafan for nine years as a complementary therapy practitioner and said: “I still love it every day.” Abi had always been interested in working with children and young people with complex needs and how she could make a difference using the skills she had. She said: “I’d always been interested in using the therapies I was trained in in a setting where I felt they were going to have a real benefit.”
Through reflexology, aromatherapy, and massage she helps to relieve symptoms, helps with pain management and to create an association with positive touch for the children. She said this was a vital element of the care that Ty Hafan offers. Children can build a lot of anxiety around being touched as no matter how gentle nurses are medication and treatments or therapy can be uncomfortable and unpleasant for a child but they need it for their wellbeing. Through the services Abi provides it creates a positive association with being touched to relieve anxiety and to not worry about being touched. Abi said: “Children’s days are often full of medication and procedures so this is a really beneficial way for them to relax. It helps to improve the quality of life as a first resort rather than medication or an invasive procedure.
“Every single day is different in that you never stop learning, you never stop having new experiences, and there’s always something that can be done. You just have to learn how to adapt and change they way you are going to approach something in order that you can provide someone with a really positive experience and hopefully make a bit of difference to their day.”
With a more open approach to talking about hospice care the less stigma will be attached to accessing their services. Even though they can only support 10 children and their families in the hospice unit at a time they reach out to so many more within the community. In doing so what a huge impact they are making to the lives of children in Wales.