The open letter, first published on the website of Forget Me Not’s Children’s Hospice in Huddersfield, has been shared following the recent Institute for Policy Research report which revealed there are currently 49,000 children with life-limiting conditions in the UK, but the way in which children’s hospice and palliative care is currently funded is “a postcode lottery.”
The report also explained how many seriously ill children need to be admitted to hospital if their condition deteriorates rapidly, rather than receiving palliative care in the community if that is what their families choose.
The hospice and mother are now sharing this letter to draw attention to the vital role children’s hospices play. In the letter, the mother explains how she found out her daughter may not survive birth.
“When we excitedly went for our 20-week scan, the last thing we expected to hear was that our baby girl had severe brain abnormalities and might not survive her own birth. When you get that kind of news, you have no idea where to turn.”
A nurse suggested she contact Forget Me Not Children’s Hospice.
“We had no idea what to expect and we were more than a little frightened – but when my husband and I walked through those front doors, we were not greeted by sickness and “the end”. Instead, we were embraced by a celebration of life, and we were offered unending hope. And by embraced, I mean our whole family. It was not just about this precious bundle we were expecting, it was about all of us.”
The mother said the children’s hospice “very soon became our go-to place of safety and comfort”, with the whole family taking advantage of facilities such as sensory rooms, the hydrotherapy pool and the music therapy room. They were also given the opportunity to record their unborn daughter’s heartbeat and used it as the backbeat for a lullaby – a keepsake the mother says she will always hold close to her heart.
“We spent a full week there, being looked after and making memories we knew we might need sooner than we could ever be ready for. We took Shalome’s footprints in clay and paint, we invited our extended family to a celebration organised by the hospice team and we spent some incredibly precious time together. With the help of their specialist staff we learned the intricacies of our daughter’s needs and I was so grateful for that practical support in a minefield of medication and equipment.”
Now aged almost two, Shalome has defied all the odds. She requires 24/7 care, but the hospice offers weekly respite for their daughter plus overnight stays, and the whole family has access to all their events and facilities.
The mother concludes the letter with this message:
“We know our baby is heaven-bound, but with Forget Me Not we have been able to make memories to last more than a lifetime. The children’s hospice is our oasis and our second home, and I do not know how we would have survived without them.”
“I am writing this letter to any family out there who, like us, have had their world turned upside down by the worst news possible. I urge you to not to miss out on the life-changing experience that Forget Me Not offers – isn’t it time for some good news?”
For more information visit Forget Me Not’s Children’s Hospice