After five years in hospital, double lung transplant recipient Alisha Kapoor is finally free
Alisha Kapoor takes a selfie outside after spending most of her life in a hospital room. (Supplied)
After spending almost her whole life inside the four walls of a hospital room, five-year-old Alisha Kapoor is finally beginning to see the outside world.
The taste of chocolate, the smell of freshly cut grass and the sound of birds are all new to the little girl, who was unable to leave an isolation room at Westmead Children’s Hospital, or eat anything at all, until her recent lung transplant.
Alisha has a rare genetic disorder known as Surfactant C deficiency, which stopped her lungs from expanding.
She was fed through a tube into her stomach and could only breathe with the help of a ventilator, connected 24 hours a day.
Raj Kapoor pushes daughter Alisha on a swing outside Westmead Children’s Hospital. (ABC News: Nadia Daly)
Only her family, teacher and medical staff were allowed to enter her room.
“She was quite sick when she came in,” said Dr Chetan Pandit, a paediatric respiratory and sleep specialist who has been Alisha’s doctor since she was admitted as a baby.
“Her lungs were constantly collapsing. She’s had a few close calls but it’s only because of the entire nursing and hospital staff that we have that we were able to save her quite a few times.”
Five years in hospital has taken its toll on Alisha’s family. Her mother Roma lived at the hospital for several years.
While officially discharged, Alisha still has to go back to hospital for regular check-ups and treatment.
“I don’t remember the last time we all had lunch together,” her dad Raj Kapoor said.
He said the family was looking forward to Alisha having her first Christmas at home.
‘Magical Adventure Shoes’
The physical restrictions that kept her mostly bed-bound have given Alisha a rich imagination and a thirst for learning.
“It’s quite tricky with a child in isolation, literally within the four walls, to have that comprehension of the outside world if you haven’t seen it before,” hospital teacher Tracey Walker said.
Ms Walker devised a novel way to teach Alisha about life outside the children’s ward.
She started a game where Alisha’s favourite gold, sparkly shoes would go on adventures for her.
“We decided that these special shoes were able to go on adventures and report back to her,” Ms Walker said.
“They are called ‘Magical Adventure Shoes’, and she got to decide what they wanted to do and what they did.
“And then when they came back she put them on her feet and listened to their stories.
“We used that to bring the outside world in a little bit and open her mind to possibilities of what she can do when she’s well, and really create a wish-list of places to go, which is really nice.”
Alisha looking forward to ‘running and jumping’
Life-changing lung transplants two months ago changed everything for Alisha.
She can now breathe and eat normally and spend time outside.
Alisha said she was most looking forward to “running, jumping” and playing with her brother and sister in the park, things she has not been able to do before.
She was the youngest person ever to have a lung transplant in Australia in what her doctor called a “miracle”.
But the immunosuppressant drugs she is on to stop her body rejecting the organ makes her more susceptible to colds and infections, so Alisha must go back to the hospital regularly for check-ups and treatment.
Dr Pandit says while everyone is thrilled about her progress, it is still too early to say whether the transplants has been successful.
“For lung transplants, the five-year survival rate is 80 per cent,” he said.
“We will continue monitoring her. She has to come to the hospital every week for assessments, making sure immunosuppression is right, not catching any infections. It’s a very close monitoring for the next five to 10 years.”
Alisha already has big ambitions for her future and told 7.30 she wants to be a doctor, working in the same ward at the hospital where she grew up.