Baby with rare genetic condition has to wait more than five-months for NHS operation

A baby with a rare genetic condition is having to wait more than five months for a crucial operation, her mum has claimed.

Little Rowanna Cookson, one, suffers from a rare condition called CTNNB1, which means her stomach doesn't allow her to eat normally and that her muscles are weak.

As one of 500 people in the world with the disorder, Rowanna is fed through a tube through her nose, which has the risk of the liquid going into her lungs.

When she was seven months old, doctors said the infant would need an operation – with mum Amy Cookson, 36, told during an assessment for the surgery last December, that she could have it during a couple of weeks.

However, months have now passed and Rowanna still hasn’t had the op, which will allow her to be fed straight to her stomach.

Amy, who is her full-time carer, is frustrated by the delays, but stressed blame lies with those ‘in charge’ rather than those on the front line helping her daughter.

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Amy, from Sheffield, South Yorkshire, 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.

"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."

While Rowanna is a ‘happy and smiley’ baby, the tube in her nose causes discomfort, meaning she often pulls it out.

She is now due to have her operation at Sheffield Children’s Hospital in May, but Amy is worried it might get cancelled.

"She’s so smiley – she has such a happy demeanour and giggles a lot,” Amy said.

"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 Sheffield Children’s NHS Foundation Trust, said the hospital is doing ‘everything’ it can to reduce waiting times.

He said: "Across Sheffield Children’s our teams are doing everything they can to see patients as soon as possible as we know how difficult it is to wait to access care.

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"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."

A Department of Health and Social Care spokesperson 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 per cent 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."

Tyla has reached out to Sheffield Children’s NHS Foundation Trust for further comment.