Baby with rare condition flown to US for $500,000 operation

A ONE-YEAR-OLD Dublin girl with a rare medical condition has been flown by the Air Corps in the Government jet to Boston for treatment.

Elie Madden will be treated at Boston Children’s Hospital in the US for digestive disorders caused by a five centimetre gap between her oesophagus and her stomach, a condition known as severe posterior tracheomalacia and long gap oesophageal atresia.

The congenital defects were diagnosed during pregnancy. Her twin sister Emie was born in good health.

The condition prevents the toddler from being able to eat, drink or swallow without medical equipment, and she has already undergone a number of operations for a related heart condition. Her medical care in Boston will involve an induced coma lasting at least three months to allow her oesophagus to grow – a procedure known as Foker’s technique.

The Gulfstream IV aircraft left Casement Aerodrome, Baldonnel, west Dublin yesterday morning with Elie on board, along with a HSE specialist medical team and family members including her twin sister, her mother, Esti Madden, from Santry, Dublin and her grandmother Anita.

It arrived in Boston at 5.50pm Irish time. It is the first time in recent years that the Government jet has been used by the Air Corps for an air ambulance trip across the Atlantic.

"It was very hard saying goodbye this morning, but the HSE and the Air Corps have been fantastic," Elie's father, Eddie Madden, told The Irish Times.He hopes to be able to take leave to travel to Boston in time for Christmas.

Since birth by emergency Caesarean, Elie has had a continuous suction tube through her nose and requires regular ventilation treatment, he said.

She spent nine months in Our Lady’s Hospital for Sick Children, Crumlin, Dublin, and latterly has been treated at home in Santry with 16-hour daily medical support.

Mr Madden said that an Irish child had been treated successfully for the condition last year.

“Knowing that Elie is going into a coma is perhaps the hardest part, but the alternative is a lifetime of medical complications,” he said.

The treatment had been quoted initially at $1.2 million (€900,000). “This has been negotiated down to a minimum of $500,000, but it depends how long the aftercare lasts,” he said.

The cost of the procedure is being borne by the HSE and VHI, with fundraising to help the stay in Boston.

To donate to the fund, visit eliemadden.com