Nine years ago, as Anshu Rajput slept on the terrace of her family home in Dudhali village in western Uttar Pradesh, her neighbour, a 55-year-old man, crept up and poured acid on the 15-year-old’s face.
By the time she was taken to a hospital that could treat her, 13 hours had passed.
The corrosive acid had scalded her skin and underlying tissues. It burnt her chest, melted her nose, eyelids and lips, and disfigured her face.
A few weeks before the attack, Rajput had spurned the older man’s advances. “He tried to force himself on me. I refused,” said Rajput, who is now 24.
Days later, he “took revenge”, she said. In 2020, a Bijnor court sentenced him to life imprisonment.
Rajput continues to struggle with the consequences of the attack. Her left eyelid does not shut properly, exposing her eyeball to harsh light all the time. She cannot fully open her mouth to eat. There are slits where her nostrils should be, a slight bulge represents her nose.
She dropped out of school for a few years, before she found the courage to deal with the stares of people. She finished Class 12 in 2016.
“I wanted to study further but the doctor said if I strained my eye too much, I may lose my vision,” she said.
Since the attack, she has undergone two surgeries— one to reconstruct her lips using skin from her thigh, and second to reconstruct the eyelid, using skin from behind her ear. “I have accepted myself as I am,” said Rajput, who has moved to Noida and wants to become a social worker and a motivational speaker.
But the bodily damage she suffered continues to hold her back from a full life.
For some years, medical science has had a radical answer to the challenges of acid attack survivors, or others whose faces have been disfigured by disease or accidents or genetic disorders – the facial transplant.
For the first time, a hospital in India has been granted permission to carry out such a procedure. But before survivors like Rajput can benefit from it, there are many challenges that need to be addressed.
A new face
In January, the Haryana state health department gave permission to a Faridabad-based private hospital to conduct facial transplants.
According to Dr Krishan Kumar, director of National Organ and Tissue Transplant Organisation, or NOTTO, a government nodal agency that monitors organ donation in the country, the permission was given to Amrita Hospital, Faridabad, after scrutinising their procedure.
“The state government will send us the standard operating procedure prepared by the hospital for the transplant. Once we approve it, the hospital will be listed on the NOTTO website as one that offers face transplant,” Kumar said.
A complete face transplant involves retrieving a face from a brain-dead person whose family has consented to the procedure.
This includes salvaging skin, bones, muscles, nerves, arteries, veins and different types of tissue grafts from a brain-dead person’s face and transplanting it on to the recipient. The face of the dead person can be preserved for two to three hours, or a maximum of seven hours if kept in preservatives.
Once the transplant is done, the face looks like a mixture of the donor and the recipient.
The surgery can take 15-20 hours and the retrieval depends on the kind of disfigurement or damage to the recipient’s face. Its cost is likely to vary from Rs 10 lakh to Rs 20 lakh.
The Faridabad hospital is working to prepare a waitlist for those eligible for a face transplant – those with permanent face damage that no reconstructive procedure can rectify. “I did not know such a transplant was possible,” Rajput said. “I am also not sure if I would want one until I know everything about it.”
Doctors at the Amrita hospital have undertaken four “practice rehearsals” on the exact procedure they would follow to retrieve a face from a cadaver. “This process can take three to four hours,” said Dr Mohit Sharma, head of plastic surgery department at Amrita hospital. Apart from plastic surgeons and anaesthetists, a ear-nose-throat specialist, an ophthalmologist and a maxillofacial surgeon will assist in the procedure.
In a transplant, the face has to be lifted off the donor and grafted onto another person, while a reconstructive process involves using skin and tissues of the same person.
“We are looking for patients whose entire face has been disfigured,” said Sharma.
The procedure can potentially transform lives of those marred by facial disfigurement caused by acid attacks, fire, accidents or attacks by animals. “These are people who feel socially isolated because of their face,” said Sharma. “This procedure can give them a chance to live normally, to look at themselves in the mirror.”
Around six years ago, another hospital, Narayana Health in Bangalore, had applied for approval from the Karnataka government to register as a facial transplant center.
“Back then, there were ethical concerns,” said Lijamol Joseph, chief transplant coordinator at the State Organ and Tissue Transplant Organisation in Karnataka. “The state government had reservations. What if it is used for cosmetic procedures or for a criminal purpose?” The request was turned down.
Joseph said the permission to Amrita Hospital was a step in the right direction. “There are several people with facial disfigurement who stand to benefit from a face transplant,” she said. “It may not be life-saving like other cadaver donations, but it will improve a person’s quality of life.”
The first transplant
In November 2005, Isabelle Dinoire, a woman in her thirties, became the first person in the world to receive a partial face transplant in France.
Six months before the surgery, her face had been mauled by her dog, Tania, as Dinoire lay unconscious.
Much later, she revealed to the press that she had overdosed on sleeping pills.
The Labrador had accidentally gnawed at her face, chewing into and disfiguring her nose, lips, chin and cheeks.
“On 27 May, after a very upsetting week, with many personal problems, I took some pills to forget ... I fainted and fell on the ground, hitting a piece of furniture,” she said during a press conference in 2016. Dinoire was divorced and had two daughters.
“When I came round, I tried to light a cigarette and I could not understand why I couldn’t hold it between my lips,” she said. “Then I saw a pool of blood and the dog beside it. I looked in the mirror and I couldn’t believe what I was seeing. It was too horrible.”
It took a team of 50 doctors and nurses at the Amiens-Picardie University Hospital over 15 hours to conduct a partial face transplant that included cheeks, lips, nose, and chin from a brain-dead woman on to Dinoire’s face. According to reports, the donor, a woman, had died by suicide.
The catch
Face transplants improve the quality of life by giving a person with a disfigured face a chance to smile, eat, chew, smell her surroundings and escape the curious glances of strangers.
But it might also shorten her life. The patient is put on a lifelong regime of immunosuppressants to ensure her body does not reject the transplanted face. This represses the immune system, making the body vulnerable to infections.
In 2015, Dinoire was diagnosed with a malignant tumour that was surgically removed. The cancer relapsed a year later. She died in 2016.
The Amiens-Picardie University Hospital admitted the possibility that a high dose of immunosuppressants might be linked with the relapse of Dinoire’s cancer.
After her death, some experts questioned whether the transplant had been the right choice, or whether a reconstructive surgery to improve her nose, cheeks, chin and lips would have helped her live longer.
Not surprisingly, face transplants remain contested.
Till date, 48 facial transplants have been carried out across the world, with the most number in the US, followed by France.
At least six of them have died, data from various news reports suggest.
In 2016, for the first time, a long-term impact analysis was carried out on seven people who received a facial transplant.
In six years of follow-up, two had died, of them one by suicide and second by a hospital-acquired bacterial infection, 65 days after the transplant. The rest showed better social interaction and improved quality of life.
When the body rejects a face
In 2010, a French man, suffering from neurofibromatosis, a genetic nerve disorder that causes multiple tiny lumps on the entire face and body, underwent a face transplant.
Six years later, his body began rejecting the face, leading to skin necrosis or the death of skin cells. He underwent a second transplant in 2018.
When a tissue or organ is implanted, the recipient body’s immune system mounts a counter attack on the foreign organ, just as it would behave during an infection.
If a hand, kidney, liver, heart or lung transplant is rejected by the recipient’s body, surgeons have an option to remove the transplanted organ.
But if a face transplant is rejected, they have to immediately attempt a second transplant and find a donor within that time frame as soon as possible. The sign of rejection can be skin necrosis, swelling, or rashes. If the transplant succeeds, the blood circulation starts immediately. The nerve grows a millimetre per day, leading to a gradual improvement in facial functions.
Experts divided
In 2003, the Royal College of Surgeons of England published a report stating that facial transplants ran a risk of failure and can have ethical, moral and legal consequences. The use of immunosuppressants could lead to lifelong risk of other infections.
“As a result of these deliberations, the working party concluded that until there was further research and the prospect of better control of these complications, it would be unwise to proceed with facial transplantation,” the report said.
The concerns had a reason. In the 1960s, the first heart transplant led to a frenzy in medicine, with at least 100 transplant departments set up to do heart transplants over the next two years. But, by 1973, most of the departments had shut down after failing to carry out successful transplants.
In 2006, the Royal College of Surgeons presented a second report that maintained that face transplants were still experimental in nature but, since doctors in several countries continued to attempt it, it called for basic criteria to be followed while selecting patients.
In December 2021, Fay Bound Alberti, professor of Modern History and Director of AboutFace in University of York, convened a policy lab with King’s College London’s Policy Institute to frame recommendations on the eligibility criteria, surgery and post-operative care required in face transplants.
Alberti’s guidelines laid stress on ensuring that surgeons choose a clinically stable, psychologically fit person who can take immunosuppressants and do post operative care.
“There are still many challenges around face transplants, and we need a consistent international approach to patient selection, measuring outcomes and data sharing,” he told Scroll via an email.
Alberti’s guidelines have not been formally adopted by the medical community.
The challenge ahead
In India, where cadaver organ donation, or donation from a brain dead patient, is still rare, finding a face transplant donor will prove daunting.
While several families of brain-dead patients are willing to donate internal organs like liver, heart, kidney and lungs, they still require counselling before they consent to donating a limb or face, since their removal will directly affect how the deceased looks.
“If we counsel 50 families, hardly one or two will agree to donate a hand of their loved one,” said Joseph, chief transplant coordinator in Karnataka. “From my experience, I can say it is difficult to explain to someone about a hand or a face transplant when they are grieving someone’s death.”
For a facial transplant, the hesitation is likely to be greater. “But it’s a misconception that the donor’s body is handed over in a mutilated state,” said Kumar, from NOTTO. “That is not how it happens.”
In a face transplant, the donor’s face is replicated using 3D printing. “We will use a compound commonly used in dental implants to create a 3D model of the face,” said Sharma. Once the face is removed for the transplant, the 3D printed face will be attached to the donor for final rites.
In a hand transplant, an artificial or prosthetic limb is attached to the donor’s body after retrieving their hand. NOTTO’s data suggests that since 2015, when the first hand transplant was conducted in Kochi, 47 such transplants have been conducted across India.
“But over 300 people are on the waitlist for hand transplant,” said Sharma, referring to Amrita hospital’s waitlist. The figures reveal the wide gap between demand and supply. “Organ donation continues to be limited in our country,” Sharma said.
Late last year, Sharma met over 250 transplant coordinators in Safdarjung hospital, Delhi, to train them on organ donation and facial transplants. “These transplant coordinators will look for potential donors,” he said.
Finding a match
For a facial transplant, the donor’s tissue and blood sample must match the recipient’s, both must be of similar age, have similar skin colour and ethnicity. “In a hand transplant, we can still have a donor’s hand of different age group or ethnicity, but in a face transplant we need to match all these factors,” Murarka said.
But before a hunt for donors, the hospital has to build a registry of potential recipients.
Sharma said they plan to register people with severe burns, those disfigured in animal attacks, those who suffer from neurofibromatosis – and acid attack survivors like Rajput.
But even if a donor and an eligible recipient is found, the cost for such surgeries and post-operative care will run into lakhs.
“My parents could not afford my treatment, or the cost of surgeries I have already had,” said Rajput. A non-governmental organisation that works for acid attack survivors, Chhanv, funded the procedures. “I cannot spend more.”
Alok Dixit, co-founder of Chhanv, said most acid attack survivors would not be able to afford the steep cost of a face transplant and lifelong medicines required after the procedure. “This may eventually deter many from opting for this surgery,” he said.
This reporting was supported by a grant from the Thakur Family Foundation. Thakur Family Foundation has not exercised any editorial control over the contents of this article.
