'World's Smallest Girl' Beats the Odds

Sept. 13, 2009— -- Born weighing barely 3 pounds, Jyoti Amge was not supposed to survive for more than 10 minutes.

"Even up to a full nine months, the child could not be seen on the scan. They said the child was not formed. It is like water and that it was not alive," says Kishanji Amge, Jyoti's father, in a National Geographic program about Jyoti that will air tonight. He and his family speak Hindi but communicated through translators.

"When they found that the baby was alive, it was a miracle," Amge said. "The doctors were in shock. It was beyond their understanding."

But Jyoti, who lives in Nagpor, India, with her parents and four siblings, recently celebrated her 15th birthday.

She attends school with students her age, enjoys fashionable clothes and jewelry, and dreams of becoming a film star. But though she is a typical teenager in many ways, she is not even 2-feet-tall.

Standing 23½ inches and weighing about 12 pounds, at 15, Jyoti is no bigger than many 6-month-old infants. According to National Geographic, record keepers say she is the smallest girl in the world.

Although it has not been medically confirmed, doctors who have treated her think she has pituitary dwarfism, or a condition caused by a malfunction of the hormone-secreting pituitary gland responsible for physical growth and development.

Jyoti's Parents Believe Her to Be a Goddess

"When I was 3, I realized I was different to the rest of the kids," Jyoti says in the National Geographic program, "The World's Smallest Girl." "I thought that everyone was bigger and I should get bigger too."

But though her mental development matches that of her peers, Jyoti's body refuses to grow.

Devout Hindus, Jyoti's parents believe their small-statured daughter to be an incarnation of a goddess and built a temple at their home with a flame that burns day and night. Jyoti's name means "light" and "life" in Hindu.

Others in the area, including the family's guru, or spiritual teacher, also believe Jyoti to be divine.

"People think that I'm the form of a goddess. That's why they show me so much respect," she says. "That's why they touch my feet. I don't mind that they think like that."

Jyoti's Dream Is to Be in Films

With her family's constant support, Jyoti has adapted to the very big challenges that come with being a very small girl. They carry her in their arms, help her with daily routines, and make sure she gets to and from school.

Her physical handicap also seems to have not restricted her ambitions.

"I would like to be an actress when I grow up," she says. "My dream is to do films."

But fragile since birth, Jyoti has sustained several debilitating injuries over the years. And though modern medicine could help her, her family's traditional beliefs have kept mainstream doctors at bay.

Doctors believe Jyoti has a calcium deficiency that makes her bones extra weak, and x-rays show that Jyoti has fractures in both legs -- her right thigh and left shin. Although she used to be able to walk to school independently, a recent accident has limited her mobility.

"I find it strange that my legs just don't heal," she says. "They should heal quickly. I don't like it. It causes me pain."

Doctor Believes Surgery Could Restore Mobility

Concerned about the long-term consequences of her injuries, last fall Jyoti's parents took her to a local hospital to meet with an orthopedist visiting from London, Dr. Ram Soni.

Dr. Soni said Jyoti's fractures had gone into pseudoarthrosis, a condition in which a false joint forms at the point of fracture. It mitigates the pain but basically creates another point at which the leg bends.

In the long-term, he said not only will she be unable to walk independently, her nerves and blood vessels also might suffer as a result.

But Dr. Soni thought an operation to remove the false joints, realign the bones and then insert custom-made metal alloy rods to keep the bones straight could fix her legs.

"I thought it could help her in many ways," he told ABCNews.com in a phone interview.

But before the operation, he wanted to run a battery of tests to better understand Jyoti's condition.

"We would like to know the underlying pathology. Why she has not developed," he said, explaining that blood tests would reveal hormone deficiencies and give insight into Jyoti's small size. "That would influence my treatment."

Jyoti's Parents Want Guarantee That Surgery Will Be Successful

Jyoti's parents were anxious about the surgery from the start, Dr. Soni said, wanting an impossible "guarantee" from him that the surgery would help her legs and not harm her life.

But "it's not free of risk and I [couldn't] guarantee the parents," he said.

Although they agreed to the blood tests, when a first attempt to draw blood proved unsuccessful and led Jyoti to tears (finding the vein on a small child can be difficult), Jyoti's parents decided against the surgery.

Dr. Soni said it was frustrating but "because she's so tiny, the parents could not see their child screaming. ... They decided to get treatment from the local indigenous doctor.

"It would have made me extremely happy if she hadn't refused [surgery]," he said. "But that's life."

Although the local doctor guaranteed the family that a paste applied to the leg would heal the fracture, Dr. Soni said nothing aside from surgery will heal her.

Blood Tests Would Explain Jyoti's Small Stature

He said he wishes Jyoti the best, but given what he does know about her condition, he said, "In a normal person, if you break a bone, if you hold it still long enough it will heal. In Jyoti's case it will never heal."

Estimating that she would live to be about 35 to 40 years of age (although acknowledging that there was much he was not able to find out about Jyoti's condition), Dr. Soni is concerned that her untreated injuries will hinder the pursuit of her dreams.

Dr. Paul Desrosiers, director of pediatric endocrinology at the Arnold Palmer Hospital for Children in Orlando, Fla., said blood tests could uncover the reason for Jyoti's short stature.

Based on what he knows of Jyoti's condition (although he has never examined her), he said it is possible that she has panhypopituitarism, a very rare deficiency involving all of the functions of the pituitary gland. He thinks she might not have a pituitary gland at all or at least does not have any of the hormones for which it is responsible.

According to the nonprofit MAGIC (Major Aspects of Growth in Children) Foundation that supports parents of children with growth disorders, hypopituitarism occurs in 1-1.5 per 100,000 individuals. Dr. Desrosiers estimated that panhypopituitarism is even rarer.

Had Jyoti's condition been diagnosed at birth by geneticists and endocrinologists, it's probable that hormone injections would have helped her reach normal height and development, he said.

But given that a firm diagnosis has not been reached and she is not receiving any treatment, he said, "I would be quite worried if she's missing all those hormones. She could be vulnerable to a major illness."

Despite the claims of modern science, Jyoti and her parents are confident in their decision to stick with traditional medicine.

"Even with the operation, it will not change her life. She will always need to be carried," Jyoti's father, Kishanji Amge, says. "There is no guarantee the operation will be successful."

In regards to the local healer, he says, "We think by coming here, it will take time to get her bones fixed, but it will definitely get her bones fixed. This is better than the hospital. At the hospital, you can spend thousands of rupees and still be stuck in bed for six months or a year. With this medicine, you're fine in less time. You will get better without the need for an operation whatever the fracture is."

For her part, Jyoti says she would not have been able to handle the surgery.

"I couldn't have taken the pain of the operation. Whatever my condition is now, at least I'm able to walk a bit," she says. "I want to move ahead in my life, and I'll try to do that. To keep moving forward. I want to be an actress."

"The World's Smallest Girl" will air 10 pm ET on the National Geographic channel. For more information, click here.