Waiting to exhale

Suffering from a rare disease, 4-year-old Alisha Kapoor awaits a heart-lung transplant, writes SARONI ROY

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Alisha Kapoor is like a regular 4-year-old – chatty, active and full of imagination. She likes to laugh and is learning how to play the violin. But there’s one way in which she is different from a regular 4-year-old girl – she cannot breathe without ventilator support.

Born with a very rare lung disease called Surfactant protein C deficiency, Alisha is missing the vital protein needed to inflate her lungs. Without this protein, her lungs collapse immediately like a deflating balloon whenever she tries to breathe.

Alisha Kapoor.Indian Link

This little girl is hoping for a heart-lung transplant so that she can breathe without ventilator support, like any other child.

Alisha has spent almost all of her life living at The Children’s Hospital at Westmead, Sydney. She spent just six months at home after birth before being admitted to the hospital and becoming entirely dependent on a ventilator 24 hours a day to keep her lungs working and ultimately, to keep her alive. While Alisha is on the ventilator, her condition can be managed. However, due to her complex medical needs, it also means that she cannot go home. The only real cure for her is a heart-lung transplant, a gift that her parents are desperately hoping will come soon.

“Alisha was 6 months old when she fell very sick. We were based in China then. The doctors there could not diagnose the issue and therefore there was no treatment. We flew back to Sydney and went to the Children’s Hospital at Westmead hospital straight from the airport,” recounts Alisha’s father Raj.

Dr Chetan Pandit, who took charge of Alisha’s case since she landed in the hospital, says, “We have had at least five similar patients of different age groups at our hospital and some of them died in the neo-natal phase. The only curative treatment for Alisha is that she needs new lungs.”

But even here, there’s a hitch. Because Alisha is so young and small, it’s too risky to separate the lungs from the heart and do the procedure. “The diameter, length and breadth of the trachea and the bronchi is very small so it’s very difficult to connect to new lungs to it. If Alisha had been older, we could’ve just replaced her lungs. So for her, it has to be a block transplant and she will also be the youngest heart-lung transplant recipient in Australia,” Dr Pandit says.

Alisha Kapoor.Indian Link

Alisha’s daily cost of bed, tertiary ICU care for 24×7 ventilation, nursing, as well as kindergarten, is about $4000-$5000 per day. But because it’s a public hospital, it is borne by the government of Australia under the Medicare system. Alisha cannot survive more than a few seconds if the ventilator is disconnected. It is indeed a massive support system for Alisha’s parents, who are able to keep their daughter alive because the Australian government and medical facilities are supporting them to this extraordinary length. Without this support, they would have lost Alisha years ago.

“I had approached a few other hospitals in USA and UK where transplant facilities are available for such young children, but it was too expensive and risky for her to travel. It would have cost me roughly $4 million plus we would have had to move there for at least a year with no job while also dealing with visa issues,” says Raj.

The Children’s Hospital at Westmead has been Alisha’s home for the last four years but that hasn’t suppressed her zest for life. Alisha is chatty and smart that can give you a complete account of her medical condition. Dr Pandit talks about Alisha’s daily life endearingly. “You have to see her to believe how active, interactive, intelligent and imaginative she is. She has directed the nurses to decorate her room. She has a wonderful sense of humour and is learning to play the violin. The occupational therapists and physiotherapists train her every day to keep her muscle strength intact. She keeps a tab on all the patients around her and all the nurses and doctors are her friends!”

Alisha has been on the transplant list since March last year and is now waiting until her family receives that phone call that she has received a heart and lung donor. When this happens, Alisha will be flown to The Alfred in Melbourne, where the life-saving surgery will take place. What makes Alisha particularly special though, is the fact that if she receives her transplant and her heart stays healthy, she will be able to gift her heart to save another child.

“In Alisha’s case, the donor has to be essentially of her height with the same blood group so that her/his heart and lungs can be harvested. Most common donor case is if someone dies in an accident. If all the organs are in good condition, they can be harvested,” Dr Pandit says.

He adds that anyone can be a donor. You can just go to the website (www.donatelife.gov.au) and sign up anytime. “There is no monetary transaction involved, it’s just that your family needs to know that you’re a donor and would like to donate your organs after your death,” says Dr Pandit.

Alisha’s family also has a fundraising page for Alisha (www.gofundme.com/helping-alisha), to support her financial costs as well as the two hospitals caring for her

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Saroni is a senior writer, editor and a PR professional. Her forte is lifestyle journalism, art, food, beauty, films and travel writing.
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