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Baby Nafisa - Hearts open to infant from Xinjiang

TODAY, Baby Nafisa from Xinjiang has her whole life ahead of her thanks to a French expat, the Shanghai Children's Medical Center, Caritas charity and warmhearted people in China and abroad. Lara Farrar reports.

Bed 27 is now famous at the Shanghai Children's Medical Center because of a baby girl from Xinjiang Uygur Autonomous Region named Nafisa Hasan who was born with her bladder outside of her body.

On March 2, the 18 month old underwent the first of two major surgeries to correct the condition; the second operation will be scheduled in a few months.

Shanghai Daily first reported on Nafisa last November ("Adventure of an Advent card," November 26, 2008) in an article about Veronique Saunier, a French expatriate with a big heart.

She and her daughter design and sell Advent calendars, donating the proceeds to charities across China, including a children's center in Yining, Xinjiang.

When Saunier traveled to Yining last summer to see how the charity was benefiting, she met Nafisa and her grandmother.

The woman was carrying the disabled infant around, desperately trying to find someone to help, or at least offer some hope.

"They were not begging," recalls Saunier, a writer who moved to Shanghai from Switzerland three years ago. "The grandmother was really trying to find a solution for this little baby. There was lots of love and tenderness between them. The grandmother was holding her and comforting her. That was beautiful to see."

Saunier says she had no choice but to try to do something.

When she returned to Shanghai, she approached the charity Caritas, asking if they would help pay for surgery to correct Nafisa's rare condition.

It is called bladder exstrophy, in which the bladder develops outside the abdomen.

The disorder occurs in about one in every 40,000 births, according to Children's Hospital Boston.

Caritas immediately agreed to help and donated 50,000 yuan (US$7,309) - the cost of the two surgeries, but not including other treatment and expenses.

After months of coordination among officials in Yining, doctors at Shanghai Children's Medical Center and family members, Nafisa arrived in Shanghai on February 17 for surgery that would make a normal life possible.

Nafisa's mother Kalbinur Ibrahim, who supports her family on a government payment of 400 yuan a month, says she never thought the surgery would happen. Nafisa has a seven-year-old brother; her father sells fruit and does odd jobs.

"When she was born, the doctors looked at her and I could tell all of them were afraid," says Ibrahim. Because of the birth defect, she did not know whether her child was a boy or a girl until medical tests were performed several months ago.

"They told me they had never seen anything like it before, and they couldn't do anything," the mother says.

It turned out Dr Chen Qimin, director of pediatric surgery at Shanghai Children's Medical Center, had operated on other children with the defect. He agreed to perform what would be at least a five-hour operation.

When he first met Ibrahim at the hospital, Chen drew illustrations so that the mother, who only speaks Uygur dialect, would understand exactly how he planned to delicately reconstruct her daughter's tiny abdomen.

Nafisa would finally have a belly button, he explained in his pictures. And she might even be able to have children, too.

Many other people have come forward to help, volunteering to translate for Ibrahim or offering other support to the family.

Camilla Abulimit, a Fudan University medical student from Xinjiang, says after posting Nafisa's story online, she received more than 1,000 e-mails, mostly from students in China and abroad.

They asked how they could help and sent words of encouragement.

One student in Hangzhou, Zhejiang Province, wanted to transfer money to Abulimit's bank account to give to the family.

Another student wanted to take children's books and food to the hospital. He took along his laptop with cartoon DVDs for Nafisa.

Ibrahim now receives daily calls from complete strangers, asking how her daughter is doing. Others simply show up at the infant's bed, No. 27, with gifts of food and toys or offering to help Ibrahim communicate with doctors and nurses. Some have even stayed the night.

"It is very moving," says Abulimit. "Many students really care very much about her."

On the day of Nafisa's surgery, March 2, three students from Xinjiang waited with Ibrahim outside the operating room for hours while doctors worked to build a new bladder from part of her intestinal tract.

Ibrahim was pale, silent, swaying back and forth, staring at the floor while the girl students tried to reassure her.

She says she was imagining what life would be like with a healthy child - one whose condition she did not have to hide from neighbors, whose diapers she did not have to change dozens of times a day, who could eat normal food, who could go outside and play with other children without getting teased, or even worse, seriously hurt.

"I have always worried, 'when my daughter grows up, can she accept this'?" says Ibrahim. "I just want to know why - why is my daughter like this? I always want to see other kids' abdomens, and when I do, I am very sad."

As the afternoon dragged into evening and the dim waiting room begins to empty, other families leave with their children who also had surgeries that day. Ibrahim sat, unsure whether she would get to leave with her child.

Then, finally, a name was called that she recognized.

Dr Chen appeared, took Ibrahim and the student helpers into a small consulting room where he explained that the surgery had been a success. His Chinese was translated into Uygur.

Dr Chen said her daughter would be able to have children of her own one day.

Color returned to Ibrahim's face. Everyone hugged her. And everyone cried.

Nafisa's journey has been a long one, and it is not over yet. In several months, she will undergo another major surgery to complete the full reconstruction of her digestive system. Mother and daughter will stay in Shanghai for at least half a year for continued treatment.

But for now, Nafisa is back in her bed, No. 27, the most famous at the hospital these days. A blue blanket covers the raised metal casing placed over her tiny body to protect her abdomen.

Her skin is slightly purple and occasionally she is in apparent pain. But she smiles, sometimes laughs, when she hears her name. And in her large, dark brown eyes, there is life.To help Nafisa

Nafisa's family needs an apartment in Shanghai where they can stay for continuing medical treatment. Those who want to help can call Veronique Saunier at 1348-214-6308 or e-mail to


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