Perhaps from an early age, we feel unable to talk about dying. For some, this might have even been discouraged. But as sensitive as it is, we must talk about this. Between April and September this year, 14 children have died at Tŷ Hafan. In that time, and throughout all the years we’ve been there for families, we have worked tirelessly to make the most out of every moment of a child’s life. It’s our purpose.
When the time comes for a child to die, we’re with our families every step of the way, providing emotional and practical help whenever and however it’s needed. There are many myths surrounding what end-of-life and bereavement care is like. In truth, every experience is unique.
End-of-life care at Tŷ Hafan
End-of-life care at Tŷ Hafan starts when we meet the family for the first time. While families might worry about their child dying at home, most of the families we work with choose not to see their child die in hospital. Being at Tŷ Hafan offers them balance – a home-from-home – with expertise from palliative care professionals.
Specialists and Family Support Practitioners meet with the family to get to know their wishes inside out. Working with healthcare professionals in the NHS, we put together and deliver individual care plans. Family Support Practitioners give families quality psychological and emotional care to help them cope with the complex and consuming feelings that death and bereavement can bring.
When the time of passing comes to a child, we’re here, making the process as comfortable and comforting as possible with medical support like pain management and compassionate removal of breathing support (known as extubation).
Families can have as much or as little privacy and emotional support they need during this difficult time. Accommodation, facilities and specialist equipment are all available at our hospice so that a family – and extended family – can stay with their child before and after they’ve died.
We offer practical help to take some of the pressure from the family’s shoulders. We can register their child’s death, help with informing other relatives and friends of their passing and assist with funeral arrangements. Tŷ Hafan’s support doesn’t end when a child dies.
Our relationship with families continues after a child has died. We offer access to support groups that can be used whenever they are needed, and for however long they are needed. Access to the hospice gardens and our memorial space is also available for quiet contemplation and reflection. We are always here for a cuppa and a chat. Always.
The Jeans family have experienced end-of-life care at Tŷ Hafan. Andrew and Catherine Jeans’ baby daughter, Rose, died of Atypical Teratoid Rhabdoid Tumour (ATRT) just days after her first birthday.
“If Tŷ Hafan wasn’t there for us, I just don’t know what we would have done. Tŷ Hafan gave us privacy. But we could still have family around us. Tŷ Hafan enabled them all to be there for us. It’s a home from home environment. Everyone matters. In hospital it’s different, it’s noisy, it’s chaotic and very clinical,” Catherine tells us.
It has to be an option for someone. Tŷ Hafan has to be there.
“What does Tŷ Hafan give you? Moments you can share. Camaraderie. Relationships in most difficult times. We are the unlucky lucky ones. How do you make that decision where to take your child to die?
“For us, we did not want to go home for Rose to die at home because you’ve got to live in that house afterwards.
“What Tŷ Hafan gives you is priceless. We would not have provided what Tŷ Hafan did for our daughter. The care and love Tŷ Hafan showed was amazing. We could come together for Rose’s first birthday. Oliver [Andrew and Catherine’s son] was entertained which meant that we could focus on Rose.
“Oliver will be 10 in December and he has had to go through so much in his life already. But thanks to Tŷ Hafan, he’s coming on amazing! He’s had counselling to help him cope with the death of his baby sister and everything we’ve had to go through.
“He’s also a member of Tŷ Hafan’s Super Sibs group and he loves that because he’s with other children who are going through similar things. He doesn’t have to say anything if he doesn’t want to. They just know. And it’s the same for us. We’re in every group. We know that you are there if we ever need anything.”
Donate and support
Without your donations, we simply couldn’t do what we do. Give children with life-shortening conditions the end-of-life care they deserve by supporting us with donations, fundraising or volunteering.
Did you know…?
Memory making is a big part of end-of-life care at Tŷ Hafan. It can include all kinds of activities, like exciting experiences, decorating the child’s room with their favourite things, taking photographs, making handprints and hand casts and creating artwork together.
Did you know…?
Did you know we have seven therapeutic support groups, such as our Super Sibs club? These groups give families space to talk to others who understand their situation.
Did you know…?
Did you know that we remember children with our Birdsong Project?
When a child dies at Tŷ Hafan, their name is translated into birdsong (the song of the bird that sings the loudest during the month they were born). The birdsong is followed by a second of silence for each year of their life.
Did you know…?
Did you know that we give bereaved families remembrance pebbles?
We offer every family that has lost a child a pebble carved with their child’s name. They can take it home or keep it in our beautiful memorial garden.
Did you know…?
Did you know that we hold two memorial services every year?
Twice a year, families of children who’ve passed away at Tŷ Hafan are invited to a remembrance service: a summer remembrance service and a candle service in the winter.