A mother has shared an open letter to give hope to parents-to-be who’ve heard devastating news during their pregnancies and to highlight the urgent need for innovative, high-quality children’s hospices in the UK.
In the letter, which was first published on Forget Me Not’s website, a mother explains how she found out her daughter may not even 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 I walked through those front doors, we weren’t 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 wasn’t 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 the many therapies and facilities such as sensory rooms, hydrotherapy pool and 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.
Against the odds, her daughter, Shalome, survived her birth and the children’s hospice cared for the whole family.
“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,” writes the mother. “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 and is a constant source of delight for the family. She requires 24/7 care, but the family is not alone. The children’s hospice offers weekly respite for their daughter, plus overnight stays, and the whole family has access to all of the events and facilities.
The mother concludes the letter with a strong message: “We know our baby is heaven-bound, but with Forget Me Not we’ve been able to make memories to last more than a lifetime. The children’s hospice is our oasis, and our second home and I don’t know how we would have survived without them.
“I’m 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?”
The open letter has been shared following the recent Institute for Policy Research report, which revealed there are currently 49,000 children with life-limiting or life-threatening 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’s what their families choose.
The charity and mother are now sharing this letter to draw attention to the vital role children’s hospices play for families.
Forget me Not is determined to transform the world of children’s hospices by taking a fresh and creative look at the way things are done. It offers new services that have never been done before – for example, a service to support families during pregnancy and birth, and is the first children’s hospice in Europe to employ a midwife.
Forget Me Not Children’s Hospice is a charity founded in Huddersfield in 2003. It already operates a children’s hospice service from Russell House, Huddersfield, which was rated ‘outstanding’ in a CQC inspection. The charity has recently taken over Grace’s Place in Bury, Greater Manchester, which it plans to open next year once it has raised sufficient funds.
"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."
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