Many families find the support of Childrens' Hospices invaluable. If you are preparing for the birth of a baby with one of these syndromes, or care for a baby or child, there may be a Children's Hospice in your area providing 'home from home' support.
Many people still associate the word 'hospice' with providing palliative care. However Children's Hospices now provide much more than that for families. They can provide support and advice to families both within the hospice and in the community. They can provide respite, anything from a short break to helping the family while the child recovers from illness, helping them to stay out of hospital.
Children's Hospice teams support the whole family, including any siblings of the child being cared for. Many of our families report lots of happy memories made during family stays at a hospice.
Children's Hospices do provide that vital palliative care for babies and children of any age nearing the end of their life. They can greatly increase the options available to you as a family for how you wish to manage this difficult time. They are experienced in working with medical professionals and families to provide the best possible support. And they provide support to families for many years after a bereavement. This support can be difficult to access elsewhere and is invaluable to many families.
Find support in your area - including hospice and respite care services - on the Together for Short Lives website.
Children's Hospice Association Scotland (CHAS) is a charity that provides the only hospice services in Scotland for children and young people who have life-shortening conditions for which there is no known cure. CHAS runs two children’s hospices and a home care service called CHAS at Home.
Family Experiences
Below two SOFT UK families will share their experiences of how hospice care supported their family.
PENELOPE'S STORY
Our daughter Penelope was born on 28th May 2015 with full Edward’s Syndrome. The Northern Ireland Children’s Hospice was such an integral part of our life with Penelope. Every single member of staff were like a second family to us. We first went when Penelope was discharged from the neonatal unit and stayed for a few nights before going home. From our very first stay we created so many memories that we will never forget, such as creating artwork with Penelope’s feet and being able to take her swimming in the hydrotherapy pool.
We got married when Penelope was 2 years old, and the hospice booked her in for a stay in Horizon House, got her all ready, brought her to our wedding and stayed there to care for her so that she could still be a part of our big day, which we will never forget.
They gave us the respite that we so desperately needed, as caring for a child with complex needs does get hard and sometimes you just needed a reset, and thankfully we had them to give it to us. We also received hospice at home sessions once a month to give us a few hours break to go out as a couple.
Penelope sadly passed away on 3rd December 2017, aged 2 years 6 months old. We always said that when the time came we would like Penelope to be transferred to the hospice, as it was like a second home, but unfortunately she was just too sick to do so. After Penelope died, the three of us as a family, went to the hospice and stayed for 3 nights. The hospice had a room all made up for us. This allowed family and friends to visit without us having to worry about anything.
I honestly cannot thank the NI Children’s Hospice enough. We would have been completely lost without them throughout Penelope’s life.
Chloe and William
IVORY'S STORY
Ivory was taken into Acorns Children's Hospice on 09.11.16 after being in hospital for 4 weeks prior. The staff were amazing. They took us to our room, settled us in, and within less than 5 minutes the doctor came to assess him. He told us there wasn't long left until he gained his wings, but we didn't feel alone. Staff were on hand until that moment.
After he passed away, I stayed there for 2 weeks in the accommodation upstairs until his funeral day. I got to spend every day with Ivory in his cool room, which the staff put a TV in for him with his favourite film the Lion King, and all his sensory lights. I would regularly bath him and change his pyjamas, it just made me feel better doing that for him. The staff were always on hand to support me if I needed. My 2 young children even got to see their brother every day.
Without this hospice I wouldn't have got through that awful time. I was allowed to spend all the time with my boy I wanted. Even now, nearly 3 years later I go there every anniversary and birthday of his to release balloons and the staff all talk about my Ivory. I’ve formed a very close relationship with all of them and I'm so glad to have them In my life.
Chelsea and family x