Wednesday 20 September 2017

Mother pays heartfelt tribute to hospital that saved her 'miracle baby' Ava from a rare strain of diabetes

18-month-old Ava Joyce and her mother Maeve at Cork University Hospital where she has been successfully treated with neonatal diabetes. Photo: Michael Mac Sweeney/Provision
18-month-old Ava Joyce and her mother Maeve at Cork University Hospital where she has been successfully treated with neonatal diabetes. Photo: Michael Mac Sweeney/Provision
Ralph Riegel

Ralph Riegel

AN IRISH mother paid a heartfelt tribute to the hospital that saved her 'miracle baby' from a rare strain of diabetes.

Ava Joyce, who is 18 months old, was born with a rare form of the illness called neonatal diabetes.

It is so rare that just one in 200,000 children are affected by the condition worldwide.

The Cork girl had also contracted a variant of the condition which had never been clinically diagnosed before.

Ava, from Douglas, was diagnosed at birth in August 2013 at Cork University Maternity Hospital (CUMH) after her alert mother, Maeve, felt something was wrong and raised her concerns with doctors.

"I felt there was something wrong during the pregnancy as I wasn’t growing as big as I thought I should be," Maeve explained.

Thanks to an incredible battle by the multi-disciplinary team at Cork University Hospital (CUH) over the past year, little Ava has not only coped with her potentially life-threatening condition but is now thriving like any other toddler.

Critically, she has met all her development targets and has the growth rate expected of a normal 18 month old.

The CUH team was led by consultant paediatric endocrinologist, Dr Susan O'Connell, who said massive strides have been made in Ireland over the past decade in the treatment of such rare and difficult diabetes conditions.

"I will never be able to thank all the doctors, nurses, biochemists, pharmacists, dieticians and support staff for what they have done for Ava and our family," Maeve told the Irish Independent.

"I simply would not have got through it only for them. It was trial and error with the different medications but they discussed everything with me in advance and got my agreement on all her treatment."

"The entire team treating Ava made huge efforts with her care and other staff including portering and housekeeping would ask about her on a daily basis. That all meant so much to me."

"There is absolutely no doubt - CUH saved her life. Ava is now thriving thanks to the staff for finding the right combination and to Susan’s continuous research on it,” she added.

Dr O'Connell said the entire team are thrilled with Ava's progress.

“This was multi-disciplinary team work at its best," she said.

"Due to recent improvements in paediatric diabetes services at CUH we successfully treated Ava despite her having an extremely rare and challenging condition."

"Fortunately we were in a position to provide all her treatment in Cork so she didn’t have to travel elsewhere.”

But Ava's condition after birth was so precarious she required one-on-one nursing in the children's high dependency unit.

It Dr O'Connell and her team three weeks of round-the-clock work to stabilise Ava's blood sugar levels.

The treatment of the Cork toddler was also aided by expert advice from consultants in the UK and Australia which had experience of neonatal diabetes.

“From the outset, the staff took up the battle to stabilise Ava’s condition as their own. The consultants, specialist nurses, ward nurses and their wider team kept in close contact with Exeter Genetic Services as they relentlessly trialled a different diabetic medication to try and wean Ava off insulin”, Dr O’Connell added.

Ava was eventually able to stop using an insulin pump and, last May, doctors finally discovered a drug formulation that controlled her diabetic condition.

The toddler was discharged from CUH last July and has not had to be readmitted since with her diabetes now fully under control.

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