The 17-year-old minor girl from Kerala's Thrissur fought many legal hurdles as organ donation by a living minor is against the law.
17-year-old minor girl Devananda from Kerala's Thrissur fought all legal hurdles to donate a portion of her liver to save her ailing father. (Supplied)
“It was around Onam festival last year. I still remember those days when my achan returned home with swollen legs every day. But we were all dealing with the loss of my father’s sister — who had died due to breast cancer — and didn’t realise what was happening to my achan,” says 17-year-old Devananda from Kolazhi, Thrissur.
Devananda is in the news these days for fighting in court to donate a portion of her liver to her ailing father, thus becoming India’s youngest living organ donor.
Speaking to South First, Devananda — fondly called Nandu at home — recalls that her father Pratheesh PG (48), who runs an internet cafe in Thrissur, had gained 20 kg in just two months. He would complain of severe tiredness and pain in his legs.
While initial blood reports were all normal, the family was still concerned and opted to take a couple of more tests, including a CT scan.
“The reports were sent to my aunt, who is a nurse at a hospital, and she said that the liver seems to have some problem and needs a thorough check. We then went to Rajagiri Hospital, where they did a few more tests and confirmed that my achan had liver disease with cancer. Liver transplant was the only option,” Nandu recalls.
After a fight of almost six months with the Kerala High Court, medical board members, doctors, her own family members, and her parents, Nandu managed to convince them all to allow her to donate part of her liver to her father.
On 9 February, a successful liver transplantation surgery was conducted at Rajagiri Hospital in Aluva in the Ernakulam district.
Pratheesh was diagnosed with end-stage liver disease. (Supplied)
Pratheesh was medically diagnosed with decompensated chronic liver disease with hepatocellular carcinoma and non-alcoholic fatty liver disease.
After hospital authorities informed the family that he had only treatment option, which was liver transplantation, no stone was left unturned to find all possible relatives who could donate a part of their liver to save Pratheesh.
However, none of the relatives were a match to his rare blood group — B negative — Nandu tells us.
She adds, “We even tried to look for donors outside the family, but they demanded around ₹30-40 lakh and we were not in a situation to pay that much. I was also disappointed that my blood group was O positive.”
It was only later that doctors at Rajagiri told Nandu that her blood group made her a universal donor. She could actually donate a portion of her liver.
However, from doctors to family members, including her own parents, everyone was totally against this.
“I am a minor and my family was worried for my own health and future. They said an outright ‘No’ to my willingness to donate my liver,” Nandu says.
Somehow, Nandu managed to convince her family and the doctors. One hurdle crossed. Until the next one — Nandu’s own liver condition.
“A CT scan report showed that I had fatty liver! With this condition, I wouldn’t be able to donate portion of my liver to my achan,” Nandu tells us.
But she did not give up. She had the doctors prescribe a diet and exercise regime that could help her reverse the fatty liver.
“I went on a strict diet and exercise regime and in one month’s time, I surprised everyone. I was deemed fit to donate. My fatty liver condition had improved and I had reduced the fat,” she explains.
Next came Nandu’s biggest hurdle — a legal one! Minors in India are not allowed to donate an organ or even tissues while they are alive.
Determined not to let it go, Nandu began to frantically search the internet for articles and medical journals to see if this kind of transplantation was successful and also legally permitted.
She found one similar case where a minor girl was allowed to donate her liver, but the surgery did not happen from some reason.
Keeping this case as her base, she approached her uncle Vinnie who took it on himself to ensure that Nandu reached the court and fought her case legally.
“According to Human Organs & Tissues Act, 1994, a minor who is alive cannot donate any organ or tissue. However, we found that an amendment was made in 2011, and under Rule 5(2) (g) of the amended Act, a minor can be allowed to donate if justifiable reasons can be given,” explains Nandu.
Based on this amendment, Nandu approached the court in November 2022. The court passed an interim order on 23 November directing the appropriate authority to appoint an expert committee consisting of three specialist doctors to evaluate the case.
Nandu is 17 years old. (Supplied)
Nandu recalls that even there the experts said that “the recipient is not a candidate for liver transplant as a treatment option”. However, Nandu didn’t give up.
The matter was heard in detail and Nandu’s counsel, Advocate PR Shaji, challenged the rejection by the committee and said that they had arrived at a decision without considering the petitioner’s capacity to donate.
He argued that “as long as the donor is medically fit and a near relative, she is bound to get permission and the Rule of Exception has to be considered”.
He pleaded with the court to overrule the decision and permit the transplantation, says Nandu.
Her counsel also argued that the expert committee had relied on the Milan, USCF protocols — which lay out the criteria for liver donation to be allowed — to deem Nandu unfit and that the team of experts at Rajagiri Health Care and Education Trust Hospital had said that liver transplant was the only option, contradictory to the committee’s report.
The expert committee then reconsidered the matter and finally submitted a report approving the transplant.
The court finally permitted Nandu to donate a portion of her liver to her achan and on 9 February, the 17-year-old minor’s surgery was conducted at Rajagiri Hospital.
The surgery, led by Chief of Multi-Organ Transplant Services, Dr Ramachandran Narayanamenon, was successful and Nandu is recovering at home.
Nandu with her father. (Supplied)
Speaking to South First, Dr Narayanamenon appreciated the girl’s strength and grit to “save her dad”, but lamented the situation in Kerala where families are being pushed to desperation to donate because of the unavailability of organs through cadaver donors.
Speaking about Nandu and her father’s condition, the doctor says that in case of a liver donation, the organ usually regenerates in about six to eight weeks and the complications in donors are minimal.
However, “as far as Pratheesh is considered, the transplant occurred at the end stage of liver disease and he also had cancer, which may recur depending on the tumour behaviour. For now, the patient is doing well and may be discharged in the next three days”, he explains.
Thanking the medical team at Rajagiri Hospital for supporting her, Nandu says that this incident has reaffirmed her long-held desire to be a doctor.
She is preparing for her Class 12 boards, which is scheduled in the first week of March.
She says, “I am doing well now. There is slight pain and tiredness, but it’s okay. I am waiting for my achan, my guide, my friend to return home safe. I am told the disease might come back, but I know my prayers are strong and I can defeat any God to save my father.”
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