A family who received support from a children’s community nursing team to enable their critically-ill baby son to be cared for at home has raised thousands of pounds in his memory to help others.
Danyl O’Shaughnessy passed away at his home in Wallsend 10 days after his first birthday. He bravely battled severe and incurable heart defects, which were discovered when his mum Danielle was pregnant.
Throughout his life, Northumbria Healthcare NHS Foundation Trust’s children’s community nursing team provided care at home to enable him to remain with his family, rather than stay in a hospice or hospital.
When Danyl died, the family used a specially-modified mattress – known as a cuddle cot – to enable them to have a few extra days with him.
The mattress preserves a baby’s body and helped his mum and dad Kevin, twin Dylan, brother Oliver, three, and other family members to come to terms with what had happened.
The family, with the help of relatives and friends, has raised thousands of pounds to enable the children’s community nursing team to have its own cuddle cot through the 4Louis charity.
Danielle said: “Danyl defied all the odds by reaching his first birthday – he wasn’t supposed to survive pregnancy or the first few days after he was born – and when it was his time to go, he passed away peacefully.
“The amazing support from the children’s community nursing team gave us the confidence to bring Danyl home and enabled us to have that precious time with him as a family and live as normal a life as possible.
“Having a cuddle cot enabled us to spend a few extra days with him, helping us process what had happened and accept it as a family.”
Julie Henderson is the team manager and palliative care lead in the children’s community nursing team at Northumbria Healthcare, which provides specialist care for children who have complex medical needs outside of a hospital setting.
She said: “When families decide they would like their critically ill child to live, and ultimately die, at home, we are committed to supporting them to do so in a safe and dignified way.
“Having a cuddle cot enables families to keep their child at home for a period of time after death. Our experience is that at a very difficult time, this can bring families huge comfort.
“Having our own cuddle cot means that we can facilitate families’ wishes without delay.”