Ganga and Jamuna Shrestha (originally posted 9/28/05)

Article from The Scotsman, April 13, 2005:

AN operation to separate two Nepalese twins with conjoined heads was widely hailed as a triumph of medicine, but a prominent neurologist said today, Apr 13, the surgery was a mistake.

Ganga and Jamuna Shrestha, whose conjoined heads were separated in an unprecedented 97 hour operation in Singapore in 2001, now lie sick and virtually immobile in a cramped apartment in Nepal’s capital, Kathmandu. They will be five years old next month.

The girls do not have a hard cover on the tops of their heads, which are protected only by skin and hair, according to the Straits Times newspaper in Singapore.

Singapore doctors had planned a second operation to install a protective lining in the twins’ heads, but no date has been fixed.

They are cared for by their mother and grandparents. Their father went back to their home village two years ago and has not returned.

Jamuna can only pull herself along the ground with her left arm and leg because her right limbs are weak. Her sister, Ganga, is unable to sit up, lift her head or talk.

Dr Lee Wei Ling, daughter of Singapore elder statesman Lee Kuan Yew, said in a letter to the Straits Times that the surgery should not have happened because the children were left with expected disabilities, and their family faces a tremendous burden in caring for them.

“The operation put Singapore on the world map, and the members of the surgical team were hailed as heroes,” wrote Lee Wei Ling, senior consultant of paediatric neurology at the National Neuroscience Institute. “But at the end of the day, to me and to the family, the operation was a mistake.”

Lee was not involved in the surgery at Singapore General Hospital, and said she advised her neurosurgeon not to participate.

“I advised him against it on the basis that even if the operation were a technical success and he gained worldwide fame, his responsibility was the ultimate welfare of the patients,” she said.

“They would have died soon if the operation was not carried out, and the young parents, after a period of grieving, could have carried on with life and probably would have more children who are normal,” Lee wrote.

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As I have argued many times, my main moral objection to separating certain types of conjoined twins is that these doctors, who are professionally obligated to alleviate these children's disabilities (or perceived disabilities), are in fact creating disabilities.

Ganga and Jamuna were born joined at the tops of their heads, their bodies positioned at a 180-degree angle. One of the sisters had a cleft palate. Their heads were so tightly fused that one sister's brain protruded into the skull cavity of the other. It was impossible to tell where one twin ended and the other began. Their situation, exacerbated by malnutrition, seemed dire. However, they were by no means doomed: conservative medical treatment, such as surgery to correct the cleft palate, could have given these girls decent lives as healthy conjoined twins.

But Dr. Goh, the man whose hubris led to the deaths of Iranian law graduates Laleh and Ladan Bijani in 2003, chose to do the impossible. After 96 hours in surgery - a world record - Ganga and Jamuna were wheeled apart.

Although the bluntness of Dr. Lee's words is somewhat off-putting, I agree with her sentiments. This surgery was a mistake, a tragic result of professional greed trumping medical ethics.

I believe that a brain is what makes a person, and if given the choice between living bound at the skull to another person for life, but with full mental faculties, or reduced to a near-vegetative state, I would choose the former. To damage a mentally competent person's brain to this extent is only slightly less abhorrent to me than outright murder. I can only imagine - if Ganga Shrestha is the least bit self-aware - how frustrating it must be to spend her entire existence lying supine, completely dependent upon others, unable to express herself in words. Her situation could have been so easily avoided by allowing these twins to live the way they were born. Either way, the pair would have been disabled; however, as conjoined twins, they could walk, speak, feed and dress themselves, and, depending upon their social situation, obtain an education. This potential has been taken from them, without their consent.

There would be no way to predict, of course, whether Ganga and Jamuna, if allowed to progress as nature intended, and provided they survived, if they would have grown up to be like the Bijani twins, whose divergent personalities eventually led to their surgical suicide, or like the Schappell twins or the McCarther twins, who, despite personal differences, have managed to lead harmonious lives. All six of these women attended college, and live, or lived, independently. These options will never be available to Ganga and Jamuna. They have been reduced to a state of severe impairment at the hands of a man who promised to help them. This, to me, is criminal.