A mum says she is locked in battle with a hospital over her son who has barely been home since his birth.
One-year-old Rowan-George Woodruff was born with atresia, a rare condition in his throat where the oesophagus does not develop properly. As a result of the condition, he required a tracheotomy soon after his birth and needs constant monitoring.
Despite being allowed home for a brief stint at Christmas, little Rowan has spent most of his life at Manchester Children's Hospital where he receives two-to-one care at all times.
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While hospital staff are working towards discharging him, mum-of-two Ashleigh Bamber, 28, says that she wants her boy to return home with her in Preston right now - describing the last year as "absolute hell".
“He's such a rare case,” Ashleigh said. “They’re so frightened of him being discharged. I just want him home with his family. It has made me feel like a very lonely person.
“My body says you’ve had a baby and craves your child when you’re not with them."
Rowan-George's condition means he was born with no upper airway or windpipe. To allow him to breathe, an airway was built using his ribcage and through his voice box. He has been allowed home for brief visits but, a year after his birth, has barely left the hospital.
This means Ashleigh has had to travel from Preston to Manchester - a 35-mile journey daily - to see her son. Her partner, Aaron Woodruff, is self-employed and works full-time after Ashleigh quit her job to care for Rowan-George.
And her eldest son, Cameron Tymon, eight, is also diagnosed with autism. She said: “I have an autistic eight-year-old and maintain a house. Manchester isn’t around the corner from me so it’s a long way. I go five to six times a week but it’s not enough, he’s my child, my baby.”
Ashleigh says she was originally told Rowan-George could return home with her as long as he had a discharge package. This would mean he needed to be constantly supervised by one person.
She says she spent £5k on adapting her house so he could be looked after in the downstairs of the home - but says the hospital then refused to discharge him. She claims they said they needed two people supervising him at all times.
“He had all the equipment at home,” Ashleigh explained. "But at the last minute the hospital said it wasn’t going to be enough and he needed two carers, not one. It’s absolutely heartbreaking – I’ve got all of his equipment here, all of his clothes and he’s not here. He’s my son and I just can’t have him.
"I know he misses me because as soon as he sees me, he’s happy and gets all excited and can’t get to me quick enough.
“I understand the hospital have done so much - they’ve saved his life and I appreciate everything they’ve done. But since the surgery there’s so much they’re forgetting to do.
“They leave him on his own and don’t play with him – every night there’s not a cuddle at bedtime, no kisses or comfort. The hospital say, ‘We don’t want you to be left alone, he needs two people at all times’.
"What they’re concerned about is if the tracheotomy is blocked or removed. Then, he has no airway and there is a big possibility he could die. I'm very aware of that.
"But we are more than prepared to sit and be with him all the time. I know you can’t just nip out and make a brew."
Ashleigh claims the hospital will only fund one carer for 145 hours a week, leaving Rowan-George without a carer for 23 hours a week.
She says they are unable to pay for a carer for 23 hours a week themselves, and says she would be required to be the second full-time carer - meaning she would be around her son 24 hours a day, leaving her unable to return to work.
A spokesperson for Manchester Children's Hospital said: “We aim to get all our patients back home as quickly as is safely possible and, with several family members now trained in Rowan-George's care, everyone's very pleased that he could enjoy Christmas at home.
"We'll continue to support Rowan-George and his family towards a successful discharge. A fully-funded care package has been agreed for him by the NHS and recruitment is now taking place for his carers."
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