Fate of Chinese baby depends on parents consent to treatment

Fate of Chinese baby depends on parents consent to treatment

By Emily Chang, CNN

February 12, 2010 2:14 a.m. EST

China's 'Baby Hope'

STORY HIGHLIGHTS

"Baby Hope" born with anal atresia, meaning she has an incompletely formed anus

Parents hesitant to consent to surgery, worry she'll live with long-term health complications

Doctors say condition can be fixed with a relatively routine surgery

Baby's parents have agreed to allow short-term care in Beijing, won't permit adoption

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Beijing, China (CNN) -- She is being called "Baby Hope." The newborn girl was born in Tianjin on January 13 with a severe birth defect her parents decided not to treat. By the time children's rights activists found her, Baby Hope was extremely dehydrated and malnourished in a local hospice.

"She was definitely on the edge," says Melody Zhang of the Child Welfare League of China. "When I saw her for the first time, had her in my arms, I thought she was dying."

The parents asked Zhang to be their family spokeswoman after the Chinese media started reporting the case with headlines like: "Family gave up on saving Baby Hope" and "Who has the right to decide Baby Hope's life?"

"The parents told me and told many other people, they did not want the baby to go through so much pain," Zhang says. "They didn't want her to have a hard life ahead of her."

Baby Hope was born with a condition called anal atresia, meaning she has an incompletely formed anus. Doctors say it happens in about one in 5,000 births, but that it can be fixed with a relatively routine surgery.

"The procedure itself to take care of anal atresia solely, is something that can be done very, it is done commonly, and it usually corrects the problem," says Dr. Randy Jernejcic, Chief Medical Officer at Beijing United Family Hospital, the facility at which Baby Hope is being treated. "I would paint a fairly positive outlook for the family."

Even with this knowledge, Baby Hope's parents have agreed to allow short-term care in Beijing, but are hesitant to consent to the surgery that could save her life because they worry that she will live a difficult life with long-term health complications. According to Chinese law, doctors need parents' consent in order to do the surgery.

Zhang, the family's spokeswoman, is concerned. "If she does not receive the surgeries in a certain time frame, she's still in danger," she says. "We still need the parents to sign the paper, and the parents haven't signed it."

Zhang says Baby Hope's parents have also decided not to give her up for adoption. However, it is not unusual for families in China to abandon children with special needs. Experts say this is often due to a lack of knowledge to care for them and inability to cover the costs.

Along with serving as Baby Hope's family spokeswoman, Melody Zhang also serves as the director of Children's Hope International in China, an international adoption agency. She says more than half of the children the agency puts up for adoption were born with disabilities.

"The majority of the families of these children don't have health insurance coverage. So if a child is born with a health problem and the cost is more than several years of annual income, it's impossible for families to come up with the money to treat the child," Zhang says. "By giving them up, actually they give the child a chance to survive."

Grace Mei Watkins was abandoned on a street corner in China when she was just three months old. Watching her bounce around with her three new American sisters on a trampoline, you would never know she was born with the same condition as Baby Hope.

"I know it's painful," says Grace's American adoptive mother, Tammy Watkins, "But it's about looking past that little bit of pain for a lifetime of joy and opportunity."

Tammy and her husband Chris adopted Grace last April. The Watkins have since taken Grace to the United States for a second surgery to correct the surgery she received when she was an infant. They are also dealing with what they hope are short-term complications. At 4 years old, Grace still wears a diaper, but doctors hope she will master control of her bowels within a few years.

Otherwise, Tammy says, "There isn't going to be anything she's not going to be able to do that any other child couldn't do.... She started school in September, she's progressing, she can write the letter 'G,' she knows her alphabet songs and she can count to 20."

"I can't imagine our life without her. It just fits."

Grace Mei Watkins' story and many others like it may give Baby Hope and her parents hope.

Zhang says Baby Hope's condition has stabilized. She is eating well and she has 24-hour care, but it is still up to her parents to decide the course of treatment, and her future.

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