Baby with craniofacial duplication (Diprosopus)

Ask anyone along the dusty, pothole-filled road heading to the tiny village of Saini, and they’ll know who she is. The one with four eyes. The one with two mouths. The one with two heads.

They are not ashamed of the extraordinary looking little girl, the villagers who live near her, the young parents, the overprotective local doctor. That’s because while she may only be 2½ weeks old, she is far more famous than any resident of this part of the country has ever been. She is famous because she was born with a condition known as facial duplication. She has one body and two faces.

“At first I was a little bit afraid,” Vinod Kumar Singh, the 24-year-old father of the girl who still does not have a name, told ABC News. “But then I accepted whatever God gives.”

In this case, God has given what many in this rural part of India consider a reincarnation of Ganesh, the Hindu God who is half person and half elephant. At first, hundreds of locals came to Saini to touch the girl’s feet, dance at her bedside and offer the family money, thinking she was as divine a person as they would ever see.

“People from corner to corner from all India and all abroad come here to take the knowledge about this child,” said Harsharan Singh, the village math teacher. “It’s a gift of God… Some people say she is like a goddess. They call the baby a face of a goddess.”

Her two faces and the single dimple on their shared cheek are as placid as any baby’s. She is the first child of a farming family, one of about 100 people living in a village 40 miles outside New Delhi. Here, the average income is less than $2 a day, and the locals either work the field or support those who work the field in any way they can.

During a recent visit by ABC News, villagers fanned the baby, swatting dozens of flies away so she could sleep. The village, like so many in India, is modest. There is no electricity, there are no toilets, and there is no technology.

The parents did not know that anything was wrong with their daughter until she was born. Tens of millions of pregnant women in rural India do not receive prenatal care.

“They’re not aware enough that they should come in for treatment,” said Dr. M. Ashmosd, the resident medical officer of nearby Saifi Hospital, where the girl was born.

Ashmosd was part of the team that delivered her vaginally. Still, he does not know the details of the baby’s condition because the parents have not agreed to let the hospital perform a CT scan or an MRI on her head.

“I’ve told them we’re ready to do the CT scan for free. But they have ignored me,” he told ABC News.

Experts in the United States who have performed surgeries on children with similar conditions say they can’t know what the baby’s prognosis will be without scans.

“A brain MRI would be illuminating, to say the least. Without it we only can presume about what could be possible or what her quality of life would be with or without reconstructive surgery,” Jorge Lazareff, the director of pediatric neurosurgery at UCLA Hospital in Los Angeles, told ABC News.

The parents and the villagers have turned inward. Visited by a dozen media outlets, they at first refused to allow an ABC News team to ask any questions or shoot any video, accusing reporters of “making stories for their own profit.” Eventually, they relented, but the local doctor refused to allow the mother to speak and interrupted an interview with the father.

“She is very normal,” Dr. Brigdal Nagar yelled, pointing at an ABC News reporter and shoving Vinod Singh aside. “We don’t need the media here. She’s not an abnormal baby. It’s just that she has two faces. And she’s living a very normal life. And if she dies in the future, it’s as God wishes.”

Villagers have tried to make her life as normal as they can. The visitors who welcomed the baby’s birth are no longer coming around. She is surrounded by only her family and their friends.

But perhaps she is too protected. Because the parents won’t agree to allow the hospital to perform a CT scan, there is no way to know exactly what she is suffering from, no way to know if her life is in danger.  There is no way to tell whether she has two spinal columns, whether there are multiple internal organs, or whether she will survive until the CT scan is completed. “She’s normal right now,” Dr. Brigdal said. “But in the future she might face problems.”

Lazareff was slightly more optimistic, writing by e-mail that “I presume that there is no reason for her not [to] live a long life. Stress on presume.”  As for the parents, they are a bit overwhelmed by all the attention. They are overwhelmed by the terrifying thought that they have to raise a child who is so visibly different.  “She’s just a simple baby,” Vinod Singh says, before admitting with a touch of sadness, “she’s not well.”  If she survives, despite the odds, she might match her reputation.

“If everything below the neck is fine, and she could keep her head up, then she could walk around and live,” said Henry Kawamoto, a Los Angeles-based specialist in facial plastic surgery. “And if she did that, she really would be a goddess.”

UPDATE:

Lali’s two middle eyes suffered from corneal opacity due to abnormal anatomy of the facial muscles, which prevented her from properly closing those eyes. (Before, it was wrongly blamed on camera flashes.)

Cleft palate caused difficulty feeding her under village conditions. A poor diet of bottle-fed sugar solution and diluted milk, allowed to drip down her throat because she could not suck properly because of the cleft palate, weakened her condition, and vomiting and infection started. Admission to hospital was delayed by discussion (including taking her back home from hospital) among her extended family and her village’s headman. Finally her parents, alarmed at her illness and dehydration, defied her other relatives and took her back to hospital, where under proper medical treatment including antibiotic and a saline drip she started to improve, and stopped vomiting, and started drinking milk and defecating normally; but 6 hours later, at two months old to the day, she died of a heart attack. She was buried in her village, as is usual in Hinduism with children who die very young. Later a temple was built at the village in her memory.

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About Aberie Ikinko

My past research ranges from biophysical testing of placentas to manipulating protein binding domains to cell culture studies of stroke but my true research interest is in the study of pain. Also I am interested in more translational or potentially applicable science to the field of medicine. Currently the lab I am working in uses electrophysiology and real time PCR to quantify and characterize the differences in rat models of neuropathy and pain at the single neuron level in the dorsal root ganglion. blogs
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One Response to Baby with craniofacial duplication (Diprosopus)

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