Bereaved parents have spoken of the wellbeing care and support they received from East Anglia’s Children’s Hospices (EACH).
Sarah and Scott Mason have a special connection with the charity as son George – their first child – received end-of-life care in May 2004.
After being born at 29 weeks, in November 1998, he remained in the Neonatal Intensive Care Unit until his due date at the end of January 1999.
He was originally diagnosed with cerebral palsy but it was later thought he had been wrongly diagnosed and instead had a degenerative disease called Mitochondrial Depletion Syndrome.
While undergoing tests at Addenbrooke’s Hospital, George’s condition then deteriorated and he had to be transferred to Ipswich’s children’s hospice, in Walker Close (EACH’s former Suffolk base, prior to The Treehouse opening in 2011).
He died peacefully three days later, in the early hours of 27th May 2004.
“We’d originally been offered support when George was three,” said Sarah.
“Our initial thoughts were ‘this is scary’, as we’d never had any connection with a children’s hospice before.
“George didn’t sleep, even with sedation or medication, and it was a challenging time for us both.
“We also had two-year-old twin boys, so hospice short-break care was suggested as a way of supporting us.
“On our first visit, the staff offered us lots of reassurance and support.
“The hospice was very homely, friendly and welcoming.
“George made lots of friends and he was admired and loved by all the staff, who looked after him so well.”
When George’s condition went downhill, Sarah and Scott stayed by George’s side, talking to him, singing and reading, but there wasn’t any sign of improvement.
After discussions with his consultant, it was considered best for the family to take him home for his final days, although Sarah and Scott decided they would feel more comfortable at EACH.
Once transferred, George’s friends, schoolteachers and family all visited to say their goodbyes.
Sarah said: “The staff were absolutely amazing and so supportive, giving us space, time and help when required.
“Alfie and Max stayed the night with me, Scott and George, although they didn’t sleep much as they were excited to be with their brother and loved the bubble bath and sensory room.”
George passed away on 27th May 2004.
“George stayed at the hospice until his funeral on 8th June,” added Sarah.
“Everyone was amazing and said we could stay or visit anytime – day or night. That included any family or friends who wanted to see him.
“The hospice also helped and supported us with the funeral and I don’t know where we’d have been without that care and support.
“Alfie and Max were offered therapeutic play and counselling and we really noticed a difference.
“They were fully supported throughout their grieving process, learning how to say goodbye to their big brother and how his memories will live on.”
Sarah and Scott and George’s grandparents also received counselling from EACH.
“We felt a massive benefit,” said Sarah.
“In the years that followed, we’ve attended memory days and events and we’re also very involved in fundraising for EACH.”
Four years later, daughter Poppy was born, in February 2008.
Despite never meeting her big brother, she has heard lots of stories and seen plenty of pictures.
She learnt that George loved sensory lights and toys, music therapy and hydrotherapy, and enjoyed going to Thomas Wolsey School, in Ipswich.
He mainly communicated through eye contact but when he lost his sight, he could still hear well, loving certain noises, and, while he could manage his food, he had a very sweet tooth.
George and Scott, both big football fans, also enjoyed meeting Ipswich Town players when they visited the hospice and he was chosen to be mascot for a game at Portman Road.
EACH managed to arrange for them to meet the England team at a training session, when they played in Ipswich in 2003.
“Poppy was 14 when she opened up and told us she was struggling,” said Sarah.
“She was grieving for someone she’d never met.”
Sarah contacted EACH and a referral was made to provide support.
“Poppy received sessions for around 18 months,” said Sarah.
“She built up a very positive relationship with her counsellor, who was amazing and made her see things in a different way.
“As a family, we could see massive benefits from the work they completed.
“Scott and myself also had sessions, which helped us in terms of ways we could work together to help and support each other.
“As a family, I don’t know where we’d be now if it wasn’t for the love, care and support we’ve received from EACH.
“We’ll forever be grateful.”