Est. read time: 10-11 minutes.
Bereaved parents whose son suffered severe brain damage at birth have spoken of the invaluable support they continue to receive from East Anglia’s Children’s Hospices (EACH).
James Eagling, along with mum Becca, dad Steve and sisters Sophie, seven, and Chloe, five, were regular visitors to the charity’s former Quidenham hospice and, since 2019, The Nook, in Framingham Earl.
James enjoyed music and specialised play there, as well as attending monthly child support groups pre-Covid. Becca, 43, and Steve, 49, have continued receiving counselling since his death in September 2021, aged just six.
“EACH is an amazing charity that supported us throughout James’ life,” said Becca, of Old Catton, Norwich.
“It’s a charity you hope you never have to know about. However, if and when you need it, you’re so thankful for what it provides.
“The first introduction we had to EACH was in the neonatal intensive care unit (NICU) at Norfolk and Norwich Hospital, when James was just a few weeks old. To start with, we were hesitant because the word ‘hospice’ scared us.
“However, Amy Brown, from the counselling team, immediately started supporting us through the sudden change in direction our lives had taken. The staff are amazing and we came across some wonderful volunteers, too.
“This was through the groups we attended and the ones who came to us as part of EACH’s Help at Home service. A volunteer would come to our house for a couple of hours a week and help us with various jobs. They were things we never had time for and our garden has never looked as cared for as it did during that period!”
James suffered severe brain damage at birth due to oxygen deprivation and was diagnosed with cerebral palsy secondary to grade three hypoxic ischemic encephalopathy (HIE) at just two weeks old.
He was in hospital from birth until he was two months old and had to have a feeding tube fitted into his stomach before coming home. This meant surgery when he was just a few weeks old.
He also went into status epilepticus just before his first birthday, which caused further brain damage, and his family were told he was not expected to survive so James was discharged for end-of-life care at Quidenham.
However, he continued to fight and both he, his parents and sisters became very much part of the EACH family.
“James began having sessions with a play specialist when he was a few months old,” said Becca.
“They’d come to our house and introduce ideas of things he might enjoy. At Christmas they showed me how to make a reindeer from his footprint and we continued the tradition every year, making cards for family which are now treasured memories.
“When James was about nine months old, we had our first visit to Quidenham. We’d been apprehensive about seeing the other children because it felt like we could be looking into James’ future, though what we’ve come to realise is that no two children are the same and you shouldn’t compare.
“James and I started going to the monthly child support groups and also the coffee mornings, for parents and carers. They gave me the opportunity to meet other families in similar situations and those mums and dads became part of our support network. Some are still good friends. The sessions were tailored towards children with additional needs but our girls were made to feel welcome and included, too.
“At around ten months, James began having hydrotherapy sessions with Debra James, the physio at EACH. He benefited from the warm water and it helped relax his muscles.
“When James had a prolonged seizure just before he turned one, the doctors said he wouldn’t survive so we arranged for him to be moved to the hospice for end-of-life care.
“We arrived three days before his first birthday and the team helped us through the uncertainty of whether he’d reach that milestone. When his birthday eventually came, they helped us make it the best it could be.
“What sticks in my mind is playing pass the parcel, because the layers were covered with silver foil paper which he enjoyed the feel and sound of. Little details like that showed how well the team knew the children and how much they cared.”
James spent his first birthday at the hospice and then, a few days later, he was deemed well enough to return home.
“Sophie was born just over three weeks after we left Quidenham,” said Becca.
“The two of them meeting was something we’d feared would never happen. James began having short-break sessions at home once he was discharged from Quidenham. The nurses became part of our regular care team and got to know us as a family.
“They always included the girls in their play ideas, too. On more than one occasion my lounge was covered in foam soap with the girls having a great time and James enjoying the sensory play.
“The short-break nurses were the first people I was able to leave James with and feel relaxed while also being able to take Sophie to the park, without having to worry about what he needed.
“We also became involved with the symptom management team and they helped us liaise with consultants, especially after James’ prolonged seizure.
“Through attending the child support groups, we were introduced to music therapist Jane Rous-Milligan. James initially joined her group sessions and then started having fortnightly sessions at home, which gave us more ideas of things he could enjoy.
“James had very little control of his muscles and wasn’t able to sit, stand or walk. He wasn’t able to communicate but those who knew him well were able to decipher some of the groans he made, while also reading his body posture.
“His muscles tensed up when he was distressed and it wasn’t easy for him to relax once they’d spasmed. It was difficult because there was only so much we could do to settle him.
“As he got older, James became more susceptible to chest infections and pneumonia and spent more time in hospital, which meant our family was often on separate sides of Norwich.
“James and I were at the hospital, with Steve and the girls at home in Old Catton. The girls were pushed between their grandparents and neighbours while Steve tried to work (as an audit director at Lovewell Blake chartered accountants).
“It was hard to cope with, especially for the girls who were unsettled by how quickly we’d go from being at home together to James being rushed to hospital and me being away for long periods at a time.”
In the last six months of his life, James was in and out of hospital with chest infections and a bowel issue, called pneumatosis coli. It led to him getting sepsis, which resulted in his final hospital admission. The treatment caused a secondary sepsis and pneumonia, which led to his death.
“When James died, one of the first calls I had was with Amy,” said Becca.
“She supported us through those first few weeks after his death and even helped us plan his funeral. We’ve also started attending monthly bereavement groups to help us meet other families going through similar pain to us.”
Becca looks back with huge love and affection when remembering James’ life.
“He was a placid little boy but had a cheeky smile that could light up the room and melt your heart,” she said.
“We called it his ‘Elvis smile’ as it was a bit lopsided, because of his muscle tone.
“James liked music and he was settled by various songs. He had a CD which we played every evening. He’d alert us when it finished and would settle when we put it on again. Some of these songs were played at his funeral.
“He also liked to be pampered with massages and we used various body butters. We’d get him to smell them first, to see which he seemed to have a preference for.
“We’d agreed when we were expecting James that he would be a Liverpool fan.
“Steve had associations to Ipswich Town and I’m a lifelong Norwich City fan, so neither of us wanted him to be a fan of the other East Anglian team. One of his middle names is even Gerrard as he was born the year his namesake left Liverpool!
“We got him a shirt with his age on for every birthday and they were displayed in his bedroom and also a full set of his names – James Lucas Gerrard.”
James died on the evening of 1st September 2021. It meant his sisters had little time to process things before going back to school.
Becca said: “In some ways it helped give them some routine but Chloe, especially, took a long time to settle going to pre-school (she started the following week).
“After James died, our world turned upside down in a heartbeat. I went from being a carer 24/7 to just being a stay-at-home mummy to Sophie and Chloe.
“Even when the care team were here, I couldn’t fully switch off and was always thinking about the logistics surrounding care and medical appointments and liaising with the carers if he was unwell or needing additional support.
“Our lives used to revolve around care, feeding and medication routines. We couldn’t make plans with any certainty as he could get poorly very suddenly and need to go to hospital. We never felt comfortable taking him far from home but we did enjoy some lovely family times at Center Parcs at Elveden Forest.
“Suddenly we were able to start taking the girls out and go further afield for short breaks and daytrips. We felt guilty and the girls found it strange that the house was so quiet without all the professionals here.
“The care team had become very familiar to them and some felt like family. There was always someone here and the girls still ask me ‘who’s coming to our house today?’ They aren’t pleased when the answer is ‘no-one’.
“They also had to deal with all of James’ equipment being collected and the house looking very different, very quickly. They helped us sort his bedroom, though, and it was their request for it to become a playroom.
“We always associated dinosaurs with James and even referred to him as ‘Jimasaurus’. Most of his clothes and lots of his toys had that theme. We wanted to make his room special and it became dinosaur-themed, in James’ memory.
“Sadly, just over a year after he passed away, we had two separate water leaks at our house, which caused damage to both his old bedroom upstairs and his downstairs bedroom, which had become a playroom.
“We’ve therefore had to repair the house, which has meant losing the playroom and all its dinosaur-themed items, and find new ways of displaying his special things. It’s tough now not having any room in the house which we can still call his room.
“Overall, we can’t express how much EACH has helped us both during James’ life and since his passing.
“While we came across many amazing charities over the years, EACH is the one which has held us up in the most challenging of times and helped guide us on the unexpected path our lives took after James’ birth and we will be forever grateful for all of their staff, volunteers and supporters for this.”
