It began in 2009. Four-year-old Ayesha Rashan was gasping for air. Her panicked teachers called her mother, Sanober. She took her back home, hoping her daughter's condition would improve with rest. It did not. So, in the evening, Sanober rushed Ayesha to the doctor in her locality in Karachi. The doctor prescribed medication that eased Ayesha’s breathlessness.
Sanober, a single mother, was relieved and convinced herself that the episode was just a temporary health issue and that her little girl would be fine soon. After finishing the medicine's course, Ayesha went back to school. But, before long, she was back in the sick room. Another visit to the doctor followed. Medication provided temporary relief. Ayesha was back in school. And, then, back in the sick room. The relentless cycle repeated.
Slowly, Sanober realised that those grim calls from the school were becoming more frequent. And, she noticed that Ayesha's breathlessness seemed to be getting worse, despite multiple visits to the doctor. But she just did not know what to do to make things better for her daughter.
One day, when she was at the school in response to yet another call from the teachers, the school doctor suggested that she take Ayesha to a cardiologist. And, at long last, there was a proper diagnosis―cardiomyopathy (a disease of the heart muscle that makes it more difficult for the heart to pump blood to the rest of the body). However, according to Sanober, the cardiologist said there would be no treatment available in Pakistan. He prescribed medication for six months, but also warned Sanober that the condition was life threatening.
Sure enough, breathlessness came back to haunt Ayesha again and she had to stop going to school. Tired, and mostly breathless, she would lie on her bed as her two elder sisters shared stories from school. Sanober was already shattered. Her struggles grew as she could not keep up with the medical expenses. She provided for her girls with her earning from a job in a private company.
But despite the challenges and the feeling of powerlessness, Sanober continued her fight. If treatment was not available in Pakistan, she would cross the seven seas to save Ayesha. She scoured the internet for treatment options overseas and frequently visited the cardiologist seeking suggestions on a hospital in the west that could treat her daughter. The cardiologist and her relatives suggested hospitals in the US and the UK. But, they were not affordable. Sanober's search for a hospital lasted years and Ayesha's condition continued to deteriorate.
Finally, one of Sanober's relatives heard of a Pakistani patient who had got a heart transplant in India. It was done by Dr K.R. Balakrishnan, chairman of the Institute of Heart and Lung Transplant and Mechanical Circulatory Support in Chennai. After verifying what she could about Balakrishnan on the internet, Sanober got in touch. It had been 10 years since Ayesha first took ill. The 14-year-old was now fighting for her life, and failing.
Even after finding a doctor, the challenges continued. Getting a medical visa to India took more than six months. By the time Ayesha got to Balakrishnan in 2019, she was critically ill. “Her heart had almost stopped,” said Balakrishnan, who is also the chief of heart transplant at MGM Health Care, Chennai.
Balakrishnan and his team performed CPR and put her on ECMO (extracorporeal membrane oxygenation)―a machine that provides heart and lung support. After a few days, another artificial heart pump―a ventricular assist device―was implanted. Sanober had been unable to afford the device and had told Balakrishnan about her predicament. The doctors pooled money to help her. Ayesha was a candidate for a heart transplant, but once the artificial pump was in place, Sanober went back to Pakistan.
Ayesha took ill again. The right side of the heart became sick and the pump got infected. Ayesha developed a leak in the aortic valve. Before they could return to India, the Covid-19 lockdown was imposed. They did not have access to equipment needed to monitor patients with artificial heart pumps and there was no treatment in Pakistan, said Sanober. And, there was literally no way out. As the weeks stretched to months, Sanober and Ayesha managed the condition solely by following the advice Balakrishnan was giving them from Chennai.
By the time the lockdown passed, Ayesha's treatment options had got complicated. The doctor's decided that a heart transplant was her best bet. Getting a medical visa post-Covid was even more difficult than it was pre-Covid. Sanober's perseverance saw her through and, in June 2023, Ayesha returned to India with hopes of getting a new heart.
Sanober did not have the money for Ayesha's surgery and care. She travelled to India only on the word of Balakrishnan and his team of doctors that the money would not be an issue. “We had to take care of expenses,” said Balakrishnan. “The Aishwaryam Trust (a non-profit organisation) came forward generously to help.” Up next was the unnerving wait for a donor.
The transplant register was overflowing with requests from within India. The list of foreign nationals seeking organs is shared with the Union health ministry's National Organ and Tissue Transplant Organisation (NOTTO). An organ will only be allotted to a foreigner if there are no Indians on the waiting list. Ayesha had been on NOTTO's waiting list since 2019. It was only in January 2024 that the heart of a 69-year-old donor from Delhi was allotted to her.
“Luckily, she got the organ,” said Dr Suresh Rao, co-director at the Institute of Heart and Lung Transplant and Mechanical Circulatory Support. “For international patients, usually it is difficult to get an organ. In Ayesha’s case, there were no takers for a heart that was available in Delhi. We did a lot of logistics, including organising a chartered flight to bring it here on time.”
On January 31, 2024, the heart was airlifted from Delhi to Chennai. Balakrishnan and his team performed the transplant. However, as the donor was much older, the heart was too big for Ayesha. So, her chest was kept open for almost 10 days. She had a slow recovery. “She had to recover completely and the doctors wanted to monitor her health on a regular basis,” said Sanober. The mother and daughter stayed in Chennai and after five months in and out of the hospital, in June, Ayesha chose to go back to Pakistan. This time, she was not worrying about the future, but determined to pursue her dream of becoming a fashion designer.
Balakrishnan had spend his own money and also sourced funds for her recovery. When asked why this case was so close to his heart, he simply said: “She is so young; like my daughter. As a doctor, for me, every life matters.”
“The hospitality we got and the care Ayesha got in Chennai has given me a new life,” said Sanober. “My only request to Indian authorities is to give visas to patients who want to get treated in India. The political or bilateral relationship should never stand in the way.”
In a world divided by borders and beliefs, Ayesha’s heart now beats, somewhere in Karachi, with a resilient spirit.