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    In a Home for the Young and Sick, Despair, Resilience, and Hope

    A charity is offering free housing to families of seriously sick children. What is life like within its walls?
    Feb 01, 2024#health#Shanghai

    Lu Qingfan’s eyes well up with tears when she thinks about what things were like before her life revolved around her youngest daughter’s illness.

    “I have no friends anymore,” she says. “Whenever my previous friends see me, they avoid saying hi for fear that I may ask to borrow more money.”

    Four days after her child, Hailin, was born, she was found to have a rare form of biliary obstruction. The condition, in which the flow of bile from the liver to the small intestine is blocked, left doctors in their home province stumped, with multiple visits to various hospitals returning no viable diagnosis.

    Finally, at a friend’s recommendation, the family turned to the Children’s Hospital of Fudan University in Shanghai, one of the country’s top pediatric hospitals. Doctors there told them that Hailin, now 3 years old, was born with fewer bile ducts than most children and put her on a new medication approved for use in China only at Fudan Children’s Hospital.

    The medicine has had a positive effect, Lu says, but the cost of the imported drugs, which are not covered by China’s national health insurance scheme, is prohibitive for a family like Lu’s. In addition to Hailin, Lu has another daughter, now 10, and must also look after her aging parents, all on her husband’s salary of 8,000 yuan ($1,114) a month. The lengthy stays in Shanghai — nearly 2,000 kilometers from their home — needed to get her daughter treatment have only compounded their woes.

    With no way to make the math work, the couple resorted to borrowing money from family and friends. “I’m probably hundreds of thousands of yuan in debt at this point,” Lu says. “It’s hard to figure out the exact number. But moving into the Xiaobu Home can at least help us cut down some of the living expenses.”

    In 2020, recognizing the high costs families from across China faced when seeking treatment in the city, Fudan Children’s Hospital and a Beijing-based charity, One Heart Sphere, launched a project aimed at providing free, short-term lodging for families with seriously ill children.

    Known as Xiaobu Home, the program has since expanded from a handful of rooms to 30. Regular free shuttle buses ferry patients and their families from the home’s small furnished apartments to the hospital. Demand is extremely high, but for families who meet the strict admittance criteria, it can be a vital lifeline as they navigate the medical system far from their own homes.

    The tenants, who are limited to 14-day stays plus need-based extensions, represent some of the most difficult-to-treat pediatric cases in the entire country. But their problems are not merely physical: One of the most important takeaways from the project’s first three years, organizers say, is the need for mental health care resources, in addition to physical treatment.

    Six-year-old Muzepper Parhat might be Xiaobu’s most tenured resident. Prior to becoming one of Xiaobu’s earliest tenants, his family spent most of their time in Shanghai sleeping in hospital corridors or hotels while Muzepper underwent treatment for a severe form of nephrotic syndrome, a kidney condition that can cause serious health complications.

    The stress of the treatments has taken a mental toll on the family, says his father, Parhat Eli. Once, Muzepper asked his dad to describe his life as a young man. After listening to his father’s stories about university and meeting and falling in love with his wife, the boy suddenly became serious. “Dad, maybe we shouldn’t continue the treatment,” the man recalled Muzepper saying. “It costs a lot of money, and even if it’s successful, I might only live until 20. Why don’t you go home and have another child with Mom?”

    Muzepper is often praised by doctors and other patients’ families as a “thoughtful and mature boy.” But this was the first time his father realized this “thoughtfulness” was papering over a heavy psychological burden.

    A growing awareness of the psychological traumas caused by illness has led Xiaobu’s backers to integrate more mental health resources into the program. “We hope to provide more psychological assistance,” says Wang Di, the regional director of One Heart Sphere.

    But while the home can offer families a much-needed private space, it’s not always possible to shield young patients from the realities of life in a hospital ward. Shen Qian, head of the nephrology department at Fudan Children’s Hospital, says that illnesses like kidney disease are a long-term battle and that children who go through it tend to mature more quickly than others. “It’s very hard for a young child,” she says. “It requires hard work on the part of our doctors, resilience from family members, and the child’s own strong will. But it’s usually not possible to expect patients and their families to be tough throughout the entire process.”

    Contributions: Chen Yue and Jiang Lüyue

    (Header image: Lu Qingfan and her youngest daughter, Hailin. Wu Huiyuan/Sixth Tone)