Saturday, June 18, 2011
FOR 57 days and nights, Ayla Sutherland lay clinging to life in St Vincent's Hospital, her only chance of survival resting on someone else's parting gift to the world.
Ayla will never meet the teenage girl who donated her lungs but she will forever be inspired by the gesture that saved her life. ''I don't know what to say except thank you,'' she said.
In the past eight months the 13-year-old from Greendale, near Warragamba, has been to hell and back. Fortunately, she is one of those rare forces of nature who never quite knows when she is beaten.
Before she turned two, Ayla was diagnosed with cystic fibrosis, a genetic illness that causes the body to produce abnormally thick mucus that clogs the lungs. Over time, infections become life-threatening, and last year a gastro bug tipped Ayla's immune system over the edge.
In October she arrived at the Children's Hospital at Westmead for what should have been a routine antibiotic treatment, but a month later she was slipping away in the paediatric intensive care unit with failed lungs. She deteriorated so rapidly that on the morning of November 17 she drew what was to be her last natural breath for seven months.
''As a parent watching on, that was as horrific as it possibly gets,'' said Ayla's mother, Tina Sutherland.
The teenager was rushed with a police escort to the paediatric intensive care unit at St Vincent's, where she was attached to an extracorporeal membrane oxygenation device. The machine creates a circuit so blood can circulate while bypassing the lungs and heart. It is designed to allow the body to rest for short intervals but it was Ayla's only chance until the right donor could be found. In what is thought to be an Australian record, she remained attached to it for 57 days.
Ms Sutherland maintained a draining vigil. ''The amount of drugs [doctors] were giving Ayla for her size was frightening - and they knew that,'' she said. ''But the alternative was for her to wake up and feel the sort of pain no child should ever have to endure. It was soul-destroying because despite being unconscious there were occasions when tears were still streaming down her face.''
Ayla's heart stopped beating several times and Ms Sutherland could tell hospital staff were trying to hide their worst fears from her. Then, at the eleventh hour, a miracle presented - a teenage female donor who was a perfect match.
Ms Sutherland paid tribute to the paediatric cardiac surgeon David Winlaw. ''I owe him my daughter's life. But not just him and his fellow surgeons - the whole battalion of transplant team, respiratory doctors and intensive care staff. St Vincent's and Westmead worked in tandem to produce a miracle. Their skill, commitment and care is astounding.''
A spokesman for St Vincent's said: ''It is very inspiring for all the clinicians involved to see such a terrific outcome, particularly from someone who was so sick. Ayla is the true embodiment of why we all should be organ donors.''
Ayla went home a fortnight ago for the first time in eight months, but many struggles still await. She has lost sight in one eye and, for now, her legs have stopped functioning because of severe nerve damage and her muscles having wasted away.
''It's going to take months of rehabilitation to reverse the destruction her body has suffered,'' Ms Sutherland said.
''Kids are adaptable, quick to recover. She knows she is better off today than a lot of people - but you also have to acknowledge and empathise with the fact that it's not OK and it's not fair. She got served a short deck.''
Giving her mother an enormous hug, Ayla said: ''Everybody in my family told me they thought I would die. Mum was the only person who never gave up hope.''