SRIYA’S STORY

Sriya Pindoria was born by emergency Caesarean on June 22, 2003, and was transferred to Great Ormond Street’s neonatal intensive care unit 14 days later. Doctors at other hospitals had said there was nothing they could do for her.

She was born with a type-4 laryngeal cleft — a rare condition in which the windpipe and the gullet are not separate tubes, but are joined right down into the chest. The condition is invariably fatal because anything that is swallowed, including saliva, goes straight into the lungs. Sriya also had a significant hole in the heart, and a blockage in her small intestine.

The Great Ormond Street Hospital (GOSH) doctors’ initial assessment of Sriya was that without risky surgery she would die. With surgery, doctors rated her chances of survival at 50:50.

Hours after her admission, doctors began a series of dozens of consultations with Sriya’s parents, Ambika and Kam, that continued during the three years that Sriya stayed at GOSH.

The first consultation, after the doctors had assessed the baby’s airway, was arguably the most difficult. Should they embark on the difficult and traumatic process of trying to save Sriya’s life, or just let her die peacefully? If Sriya wasn’t operated on very soon, her condition would be too severe for her to have a chance of surviving surgery.

At the meeting, Martin Bailey, the consultant paediatric ear, nose and throat surgeon, explained that repairing the cleft would involve several separate procedures, including making a tuck in Sriya’s stomach, putting her on a heart bypass machine, splitting the breastbone to give access to the windpipe/gullet, and then grafting in a sliver of tissue into this tiny tube. And then there was the long haul of recovery afterwards.

The Pindorias were at first doubtful whether it was right to drag things on for her. They went away and talked to doctors, and researched the condition for themselves. The different ways that the family, doctors and a family advocate saw this initial decision-making process can be seen on the right-hand side of these pages. It was, says GOSH, a case in which both doctors and family were unsure what the right thing to do was. But the Pindorias decided to go ahead with the life-saving operation.

The first operation to repair her cleft was carried out on July 24, 2003. But just over two months later another more difficult operation became necessary when the first graft failed.

In the end, more than two dozen surgical procedures were required during Sriya’s three-year hospital stay. She had three heart attacks caused by respiratory failure. At one point her heart stopped for six minutes, and there were fears — fortunately unfounded — that she might have suffered severe brain damage.

Sriya didn’t smile until she was 15 months old. It wasn’t until she was 18 months that her organs stabilised. And she was being ventilated until October last year. In February 2006, Sriya was well enough to go home. She was then approaching three years old.

THE PARENTS

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