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The Race to Save the Baby with ‘Two Heads’

A rare birth defect leaves a Myanmar newborn with a dangerous bulge growing from her head. When local doctors say there’s nothing they can do, her desperate parents scrape together the funds for an epic journey to save her life.

The Race to Save the Baby with ‘Two Heads’

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“Before my baby was born, the village doctor came and felt my belly, and told me she would be born with two heads,” says Daw Lae Lae, who was seven months pregnant at the time. Her daughter, Than Zin Moe, was not born with an extra head, but suffered from meningocele; a rare condition in which the meninges protruding from a spinal opening allows fluid to be trapped in a fold of skin on the back of the head, creating a large sack. After Than Zin Moe’s birth, her parents borrowed money to take her to a hospital in Yangon, the commercial capital of Myanmar. “It took them a month to do an x-ray,” says Lae Lae. After the x-ray, “I was happy because I thought they were finally going to do something to help my baby. I waited all day for the news without eating and just had a bottle for the baby.” The doctors told Lae Lae to bring Than Zin Moe back when she was older; there was nothing they could do. Broke and in despair, the couple sullenly returned to their village in Mon State.

Due to her baby’s medical condition, Lae Lae must breast feed Than Zin Moe lying down.
Due to her baby’s medical condition, Lae Lae must breast feed Than Zin Moe lying down.

As Than Zin Moe got older, the bulge on the back of her head grew larger. Eventually Lae Lae needed to breastfeed her lying down. Than Zin Moe’s bulge was now bigger than her head — something needed to be done.

From the banks of the Moei River, Lae Lae (second from left) watches as her husband U Nay (right) and a friend carry Than Zin Moe on a bamboo stretcher to a truck to transport them to the Mae Tao Clinic.
From the banks of the Moei River, Lae Lae (second from left) watches as her husband U Nay (right) and a friend carry Than Zin Moe on a bamboo stretcher to a truck to transport them to the Mae Tao Clinic.

A monk advised them to go to the free clinic in Mae Sot on the Thai-Myanmar border. The family saved for months for the trip by working every day at a rubber farm — a job paying only one dollar for each day of work. Lae Lae’s two sons were taken out of school to save money. Three months later they left for the border, about a five-hour journey by truck.

At the Mae Tao Clinic, the doctors said Than Zin Moe would not survive the operation — her condition had progressed too far. The family planned to travel back home in the coming days, once again out of hope for their daughter.

A crowd gathers to gawk at Than Zin Moe’s unusual medical condition at the Mae Tao Clinic in the Thailand-Myanmar border town of Mae Sot.
A crowd gathers to gawk at Than Zin Moe’s unusual medical condition at the Mae Tao Clinic in the Thailand-Myanmar border town of Mae Sot.
An unofficial border crossing point on the Moei River in Mae Sot, close to where Lae Lae and Than Zin Moe entered Thailand from Myanmar.
An unofficial border crossing point on the Moei River in Mae Sot, close to where Lae Lae and Than Zin Moe entered Thailand from Myanmar.

But the next day, the family returned to the clinic. They met a representative of the Burma Children’s Medical Fund, an independent child welfare group. The fund opened a case for Than Zin Moe.

Later, they sent her to Chiang Mai in northern Thailand for tests. Once they got the green light for payment from their affiliate aid group, Child’s Dream, the operation could be performed.

“I can’t describe in words just how happy I am now,” said Lae Lae.

Lae Lae prepares Than Zin Moe for a bus trip to a hospital in the northern Thai city of Chiang Mai, where she will have surgery.
Lae Lae prepares Than Zin Moe for a bus trip to a hospital in the northern Thai city of Chiang Mai, where she will have surgery.
An X-ray of Than Zin Moe's skull shoes how far her meningocele has progressed.
An X-ray of Than Zin Moe’s skull shoes how far her meningocele has progressed.
Than Zin Moe holds her mother’s hand before her operation.
Than Zin Moe holds her mother’s hand before her operation.
Lae Lae comforts Than Zin Moe before her operation.
Lae Lae comforts Than Zin Moe before her operation.
Lae Lae escorts Than Zin Moe and hospital staff to operation room.
Lae Lae escorts Than Zin Moe and hospital staff to operation room.
Than Zin Moe sleeps soundly after undergoing a successful operation.
Than Zin Moe sleeps soundly after undergoing a successful operation.

Lae Lae’s prayers were answered: the fluid sack was removed. For the first time in Than Zin Moe’s young life she could sit upright with help from mom.

The infant’s life was spared but not before losing her sight and hearing. There may have been brain damage, too.

“Whatever people said about my baby, I wasn’t going to feel hopeless,” says Lae Lae. “Whatever the difficulties we faced I was determined to fight. My baby is my baby no matter the problems she has.

Two weeks after the successful operation, Lae Lae and her baby stay in a care residence near the hospital.
Two weeks after the successful operation, Lae Lae and her baby stay in a care residence near the hospital.
With her physical deformity removed, Than Zin Moe is carried like a normal baby by her father U Nay. The family is about to leave the Mae Tao Clinic to travel back to Myanmar.
With her physical deformity removed, Than Zin Moe is carried like a normal baby by her father U Nay. The family is about to leave the Mae Tao Clinic to travel back to Myanmar.

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