Amy Cookson says her daughter Rowanna has been waiting for an operation since December (Picture: SWNS)
A ‘happy and smiley’ baby with a rare condition has had to wait at least five months for an operation, her mum claims.
One-year-old Rowanna Cookson is one of only 500 people in the world with the CTNNB1 genetic disorder, which means her stomach doesn’t allow her to eat normally and her muscles are weak.
Her mum Amy, 36, was told Rowanna would need an operation when she was just seven months old.
Currently Rowanna is fed through a tube in her nose, but the surgery would allow her to be fed straight into her stomach.
But although Rowanna was assessed for the operation in December 2022 and told she could have the operation in a matter of weeks, she’s now not due to have it until May.
Amy, who is her daughter’s full-time carer, says she blames ‘the people in charge’ rather than the doctors and nurses who are looking after Rowanna.
She said: ‘I don’t blame the nurses, they are great and think she needs the operation.
‘I blame the people in charge, the system, and government policies.
Rowanna is fed through a tube in her nose (Picture: SWNS)
‘It’s not working. Most recently, they’ve blamed the junior doctors strike. But she was referred on December 5 and saw a consultant in February.
‘I’ve signed the consent forms and pre-op. We want the operation as soon as possible.
‘Rowanna deserves to be fed properly and safely, it’s as simple as that. Rowanna has a lifetime of disability ahead of her.
‘The least we can do is get her fed comfortably and safely.’
Being fed through a tube in her nose means Rowanna is at risk of liquid going into her lungs. The tube also causes her discomfort and she sometimes pulls it out.
She is due to have her operation next month at Sheffield Children’s Hospital – but Amy ‘wouldn’t be surprised’ if the date was cancelled.
Rowanna needs an operation at Sheffield Children’s Hospital (Picture: SWNS)
Amy, from Sheffield in South Yorkshire, said: ‘She’s so smiley – she has such a happy demeanour and giggles a lot.
‘Everyone says how happy and smiley she is. She’s always really patient when she gets taken into the hospital.’
Craig Radford, chief operating officer at the hospital’s trust, says they are ‘doing everything they can’ to reduce waiting times.
He added: ‘We know how difficult it is to wait to access care.
‘As we provide a number of specialist services we have a high number of patients coming to us for care they can’t receive elsewhere.
‘We are reducing waiting times in a number of ways, including introducing more weekend and evening clinics and surgery options for some specialities.
‘We are seeing a decrease in waiting times for patients but we’re continuing to work hard and find new ways to see people as quickly as we can to avoid any further delay.’
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A Department of Health and Social Care spokesman said: ‘Cutting waiting lists is one of the prime minister’s top five priorities and the longest waits for treatment are falling, backed by a record £14.1 billion over the next two years to address the most pressing issues facing the NHS and social care.
‘The NHS successfully met the first target in our plan to virtually eliminate waits of over two years and has cut 18 month waits by over 50% in a year.
‘NHS trusts are using innovative surgical hubs and surgical robotic systems to help drive up the number of operations and improve outcomes for patients.’
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‘I don’t blame the nurses, they are great and think she needs the operation. I blame the people in charge, the system, and government policies.’
