An Aberdeen mother has raised funds to purchase a Cuddle Cot for the local CHAS at Home service, run by Children’s Hospices Across Scotland, in memory of her baby boy Jaxon.
A Cuddle Cot is a piece of equipment that works as a cooling device for babies who are stillborn or have a life-shortening diagnosis from which they will soon die. The coolness increases the amount of time families can spend with their baby.
Speaking of her donation to the charity, Lisa Stars, 38, said:
“With the help and support of all my beautiful friends and family, I am absolutely delighted to be able to provide CHAS with this cuddle cot, keeping Jaxon’s memory alive in a positive light.
“We miss him every day and doing this will help make every day a little bit easier. CHAS provided us with so much help and support while Jaxon was still with us and I will always be eternally grateful for that.”
Jaxon was diagnosed at birth with Ohtahara Syndrome – an extremely rare, life-shortening form of epilepsy which causes seizures and developmental delays – and Pontocerebellar Hypoplasia, a neurodegenerative disorder. CHAS at Home began supporting Lisa’s family from May 2017, when Jaxon was five months old, to afford her more time to spend with elder son, Antony.
The Stars also used CHAS’ Rachel House children’s hospice in Kinross for a respite break every few months. It was during a planned break there that Jaxon died, aged 13 months, on 9 February 2018. The family have since received bereavement support from CHAS at Home and the hospice.
Dawn Entwistle, Clinical Nurse Manager, said:
“This particular donation means a great deal to us and we expect it will mean a lot to many of the families who use CHAS. The cuddle cot is about giving the families choices. If their baby dies in hospital, the family are able to take their child home until the funeral if they wish, rather than going to the mortuary.
“If they have chosen to have their baby at home for the end of life care, they can keep their baby at home after they die by keeping their body cool in the cuddle cot.”
CHAS is the only charity in Scotland that provides hospice services for babies, children and young people with life-shortening conditions and its dedicated CHAS at Home office in Aberdeen played a crucial part in Jaxon’s care.
This outreach service, which has a second office in Inverness, sends trained carers into the community to offer respite and nursing to families either in remote locations or in cases where it’s easier for children to be looked after in the comfort of their own home.
The national charity also offers palliative care and family respite via its two hospices, Rachel House in Kinross and Robin House in Balloch, and through its Diana Children’s Nurses who work in hospitals across the country to support families and clinical teams.