Josh’s story
Following a normal pregnancy, Rachael and Alex were excited to meet their second child, Josh, at the start of 2024. Yet, what should have been a straightforward labour became anything but, when Rachael was rushed for an emergency caesarean.
“Following the caesarean, Josh was taken to the neonatal unit for the next couple of days,” explains dad Alex. “Then a neonatal consultant took Rachael and I aside to let us know they’d been monitoring Josh overnight and following an ultrasound, found a pretty significant brain bleed. And we just broke down at this point.”
Rachael and Alex would later learn Josh had a grade four bilateral brain bleed at birth. Josh was transferred to St George’s Hospital in London, who specialise in children with severe brain injuries.
Alex continues, “He was in St George’s for a month. Initially we were meeting with neurologists who said it’s not that bad, he may have mild cerebral palsy. Then he had another MRI and they said it’s really bad.”
Rachael explains, “We were told he would never walk, talk, and he was officially blind and that he should move to advanced care. All seven specialists said at this point in his best interests we should stop all treatment and move to Shooting Star Children’s Hospices. None of them thought he’d survive his first Christmas.”
The family were then introduced to Sinead, Perinatal Care Nurse Specialist at Shooting Star. “Sinead was very welcoming at the hospital,” says Rachael. “Obviously, the thought of a hospice does mean end of life, and that’s where we thought our journey was going to take us.”
“But the moment we walked through the doors and the nurses met Josh, they have cared for him ever since, and I don’t think we’d be here without Christopher’s,” she continues. “I honestly don’t think that the unit we are as a family would be what it is without Shooting Star.”
“I don’t think we’d have made it,” Alex agrees. “Josh has global brain damage, he’s blind, and has quadruple cerebral palsy. He will never talk, walk, eat food and although now two and a half years old, he’s the same as a newborn. He has medications, occupational therapists, physios, speech therapists, dieticians – it’s an endless list, and we have our five-year-old Ben as well.
“So, coming to Shooting Star, they love it. Ben thinks it’s a holiday coming here,” says Alex. “I love Josh,” shares big brother Ben. “I love playing with him and I like cuddling him and go with him on walks.”
“Josh loves to go swimming, the sensory room and to the soft play. They all clamber after him and it’s clear he’s very loved here,” Alex smiles.
“I don’t think we’d have survived to this point, without the hospice nurses, the Specialist Paediatric Palliative Care team (SPACE) team being on the end of the phone,” Alex shares, “Day-to-day life is very difficult, difficult in ways, until you have a child like Josh and experience it, you don’t really know. Until you have something like that, you don’t realise how impactful that is on you, particularly me,” shares Alex. “I’ve struggled a lot with my mental health since Josh was born.”
“I had counselling very early on when we were here, and it’s always there, so I know I can come back at any point,” says Rachael. “Just knowing that there’s somebody.”
“Due to his age, the amount of care he gets from social services is very limited, so if everything fails, we call the hospice, the SPACE team, the consultants. Dr Hannah, who was his first consultant, has helped us through everything,” says Alex. “Alison, the Social Worker, battled to help us keep our respite hours. They’re always there when other services aren’t. The team are just endless and everywhere. And even the catering, the food’s amazing!” exclaims Alex.
“Shooting Star is just an incredible charity,” says Rachael, “and is a happy place to be.”
“It is,” nods Alex, “they just care, and without Shooting Star, I don’t know where we’d be.”
Please help us continue to be make moments count for families like Josh’s and consider donating today.
