independent

Thursday 17 April 2014

Family gather by Elie's bedside as toddler kept in coma until 2012

Baby Elie pictured last month in her mother Esti's arms. Her father Eddie Madden holds twin Emie

THEY won't get the Christmas miracle they were wishing for -- but the family of toddler Elie Madden is hoping the new year brings better news.

The seriously ill one-year-old from Dublin has been in an induced coma for the past 25 days while undergoing pioneering surgery at Boston Children's Hospital in the US.

She will remain unconscious for at least another two weeks.

Elie, who is a twin, was born with an extremely rare condition where she has a 5cm gap between her oesophagus and stomach. This means she cannot eat or swallow and her airway needs to be constantly cleared with life-saving suction machines.

While her treatment in Boston is going well, doctors have discovered some new complications.

Speaking to the Irish Independent, Eddie Madden, Elie's father, said he would fly out today to join Elie, her twin Emie, and their mother, Polish-born Esti.

Mr Madden is a chef in Shanahan's on the Green restaurant in Dublin city centre.

"Her doctors expect she will be in a coma for another two weeks so we're not going to get the Christmas miracle we were hoping for," he said.

"They've uncovered a few more complications with her. They have shortened the gap from 5cm to 2cm. However, there are now problems with her trachea and larynx."

The new complication means that, were the gap between Elie's oesophagus and stomach to be successfully closed, she would still have difficulties swallowing as fluids and food would go into her airway.

Treatment

Despite this setback, Mr Madden said the best place for his daughter was in Boston where Dr John Foker, the surgeon who masterminded the procedure to close the gap, has come out of retirement to help with Elie's treatment.

"We really want her to stay there (Boston), we don't want her to come home unrepaired," he said.

"We are getting the answers to all our questions over there. The brain scan that we were waiting 11 months for in Ireland was done in two hours."

Mr Madden said he would be in Boston for two weeks and could not wait to be reunited with his family.

"Christmas Day will be in the hospital," he said.

"We'll try and have as normal a Christmas as possible."

While the €500,000 cost of Elie's treatment is being covered by the HSE and VHI, the family's living expenses in Boston are not.

They are paying $6,000 (€4,600) a month for a small apartment near the hospital.

To make a donation or learn more about Elie's story go to eliemadden.com.

Irish Independent

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