Walk out of the hospital and actively seek
Zheng Xiaowei is the director of pediatrics at the Maternal and Child Health Hospital of Fuping County, Hebei Province. He has worked here for almost 20 years. Since November 2021, there has been a thick stack of hospitalized lists of children with serious illnesses in Fuping County on her desk. She called the above names one by one, but the mobile phone couldn't get through, so she changed the landline and continued calling. Many family members thought she was a liar and died immediately.
She explained to the other party on the phone: We have a "Xiaoludeng Children's Critical Illness Relief Public Welfare Project" here, which can share the treatment costs of your children. "Hundreds of diseases, starting at 3,000 yuan." The family members did not believe it: "It is impossible for such a good thing to happen."
The first person she came into contact with was an eight-year-old boy named Zhao Zihang (pseudonym) suffering from congenital heart disease.
Having come into contact with many families with disadvantaged children, Zi Hang's family's environment is harsh and difficult beyond her imagination. The temperature in Fuping in winter is close to zero. Because coal is too expensive, there is no movement in the coal stove. There is only one old electric heater in the house. The child's father said that the electric heater was bought from a scrap yard, and it was too cold to turn it on for a while. When I go to bed at night, I will spread all the quilts in the house. "Other furniture, almost nothing."
Because of congenital heart disease, Zihang couldn't jump like boys of the same age, and never took a physical education class. Both Zihang's father and his 70-year-old grandfather worked in the contractor team on the construction site. His father had injured his hand and could not do heavy work. The family earns what they earn every day, and if there is no work, there is no income. My mother suffers from diabetes and cannot go out to work.
Zihang's father said that the child was diagnosed with congenital heart disease at the age of seven, and often suffered from shortness of breath and cough. Other daily activities are no problem.
"We also want to treat our children, but we don't know where to take the next step, where to look, and how much it will cost." He said in a helpless and resigned tone.
Director Xiaowei is no stranger to the sense of despair behind these words. She has worked in the Maternal and Child Health Hospital for more than 20 years, and she is well aware of the difficulties of many local families. There are also cases of giving up treatment due to various pressures. The 42-year-old mother of three made her more empathetic, a situation that always left her with a deep sense of powerlessness.
Zihang's father's eyes lit up when he heard about the Little Deer Lantern project. This public welfare project will undoubtedly help him take a big step forward in treating children.
Precisely "recovering" children like Zihang is the key work of Xiaolu Deng's " active rescue " . On June 1, 2021, the Alibaba Health Xiaoludeng Children's Critical Illness Relief Platform was launched. Alibaba Public Welfare and Ali Health Welfare joined forces with governments at all levels, well-known medical institutions, medical experts, and authoritative public welfare organizations to launch a rescue project for children with birth defects. Families of children with serious illnesses in underdeveloped counties who are in difficulty provide medical care channels, connect with high-quality medical resources and provide medical fee assistance, while helping to reduce the burden of travel and accommodation brought about by going to other places for medical treatment.
In November of the same year, after the Xiaolu Lantern project was launched in Fuping County, the County Maternal and Child Health Hospital, with the support of the County Health Bureau, Medical Insurance Bureau, Civil Affairs Bureau and other relevant departments, included the local financial media public account and put up posters in the village clinics , Going to the countryside to visit households and other methods to expand publicity and find families in need. Find out a list of seriously ill children, and then the doctors will call one by one to "catch the bottom of the net".
In August last year, Zihang underwent heart surgery in a tertiary hospital in Shijiazhuang, Hebei Province. The hospital expenses totaled more than 70,000 yuan, reimbursed by medical insurance, plus the Xiaolu Deng subsidy. In the end, Zihang’s family paid more than 10,000 yuan out of their own pocket. Zihang's father said that luckily he caught up with the Xiaolu Lantern project, "The child is very lucky. Otherwise, I don't know what to do."
Solve the common people's "dark eyes"
The "active rescue" model is a characteristic path explored by the Xiaoludeng team. The team cooperates with governments at all levels, professional foundations and high-quality medical resources to actively look for those seriously ill children who have not been able to go to the big hospital for various reasons. Under the traditional rescue model, children who are sick can only learn about relevant rescue programs when they go to certain large hospitals for treatment. However, critically ill children who fail to enter large hospitals due to lack of information or financial difficulties are often blocked from the traditional rescue system.
According to Fan Chunlan, director of the Maternal and Child Health Hospital of Fuping County, "Some families have no money, so they don't go to big hospitals for medical treatment, and they just keep procrastinating. lifelong danger."
Fuping County, located in the deep mountainous area of Taihang, used to be a typical poverty-stricken area, and it has just been lifted out of poverty in 2020. In recent years, the living conditions of the local people in Fuping have improved, and their basic life has been guaranteed. But if there is a seriously ill child in the family, the family will be overwhelmed all at once. I don't want to give up, but I don't know where to look, and I don't have money yet. "That kind of situation is the same as Zihang's father, "I don't know what way to go. "
In the words of the parents, "Two eyes are darkened, very passive".
Fan Chunlan and her colleagues were very excited when the Xiaolu Lantern project was about to land in Fuping County. Most of the children who need help here are scattered in various towns, even villages and mountains. What they lack is not only money for medical treatment, but also awareness and confidence. Only by actively discovering them and extending a helping hand can parents be led out of the state of "dark eyes".
In addition to taking the initiative to find sick children, Zheng Xiaowei and his colleagues also took the initiative to "push the parents away". This is related to the cultural level and medical knowledge of the local people. Like congenital heart disease, it does not seem to affect the child's short-term daily life. "Parents feel that as long as the child is still alive, there is no immediate danger to his life. He is not so anxious. The action will be slower." Zheng Xiaowei said.
Several months after the visit, Zihang's father has not taken the child for surgery. Xiaowei thought that it was probably because the other party’s medical awareness was not enough, so he continued to explain many times: If the child’s development is affected if the operation is delayed, Zihang may develop pulmonary hypertension, which will affect the function of the heart and blood vessels, and affect the blood supply. After a long time, all organs will be affected.
This situation is not uncommon. There is a child just over 20 days old who suffers from pulmonary hypertension and congenital heart disease. Fan Chunlan consulted with a free clinic expert organized by the "Little Deer Lantern" project, and the other party said, "Children suffering from pulmonary arterial hypertension must have surgery as soon as possible, otherwise it will affect the development of body organs and nervous system."
Similarly, Fan Chunlan repeatedly emphasized the urgency of the operation to her parents, and the parents finally took action. "Because they have no channels to learn about medical knowledge, coupled with economic pressure, they will be delayed, and we have to push them all the way." What is offered is not only search, but also service, as well as motivation and hope.
In the Xiaoludeng project, grassroots doctors like Fan Chunlan and Zheng Xiaowei play the role of "matchmaking bridges" - connecting patients with high-quality rescue resources. Medical resources in Fuping County are relatively scarce, especially expert resources. The Maternal and Child Health Hospital maintains a long list of free clinic experts. An important way for the Little Deer Lantern Project to find rescue targets is through free clinics. In recent years, the project team has cooperated with the China Birth Defect Intervention and Assistance Foundation, China Social Welfare Foundation, etc., and organized authoritative medical experts to form a free clinic team to Fuping.
After the free clinic, grassroots doctors can establish contact with free clinic experts. If the parents of a patient cannot register, or if they need to be consulted, the grassroots doctors will help to contact the free clinic experts. Although the free clinic is over, this "medical assistance" will continue.
Accompanying, bringing parents confidence in continuous treatment
In Fuping County, families with children with autism have particularly high demand for the Xiaolu Deng project. On the one hand, there are few aid programs related to autism, which are difficult to reimburse and costly; on the other hand, autism usually requires life-long rehabilitation training, and the rehabilitation period is long and the total cost is huge. Under the double pressure of economy and psychology, many parents of children with autism are on the verge of collapse.
Meng Fang, the head nurse of the Maternal and Child Health Hospital, was very distressed when she saw Wang Chenxi (pseudonym) for the first time. The girl is more than three years old, she is pretty, and she can't speak or walk yet.
Wang Chenxi's parents have never given up. After the child was diagnosed with autism, they took the child to the hospital for rehabilitation every month. The mother could not find a job, because most jobs did not allow her to spare half a month to take care of the child. My father is working part-time and earns about 2,000 a month.
Meng Fang saw that Wang Chenxi's house didn't have any decent furniture. Because she couldn't walk, Wang Chenxi could only stay in bed most of the time.
This is a rescue company that lasted more than eight months. Wang Chenxi's single hospitalization fee is about 10,000 yuan, and the Xiaolu Deng project has supported her four hospitalizations, with a total reimbursement of more than 24,000 yuan. On March 17, Chenxi was discharged from the hospital and received the fifth rescue. "One of the characteristics of the Xiaolu Deng project is that it can be reimbursed repeatedly, unlike other projects that end at one time, which can support parents to continue treatment, which is very important for children like Xiao Chenxi." Meng Fang introduced.
After treatment, Chenxi learned to call mom and dad, and she was able to walk all over the room with her hands on the wall, although she walked slowly.
The parent said almost in tears, "The child has been helped, and I hope to help others in the future." Hearing this, Meng Fang also became jealous.
So far, the Xiaolu Lantern Project in Fuping County has rescued a total of 192 children with serious illnesses. Among them, there were 72 patients with congenital diseases and 120 patients with acquired diseases. Many of them were children like Chen Xi who needed long-term treatment.
The last time they met, Wang Chenxi would take the initiative to say to Meng Fang, "Goodbye, auntie." Xiaowei also just heard that Zhao Zihang has jumped like a normal child, and he can also take physical education classes. They all feel at ease and satisfied: they just do some small things, but they help their children have a healthy life.
"It's really uncomfortable to see the child look down on the disease and delay the treatment." Xiaowei's recognition of the Xiaolu Lantern project comes from a very simple professional emotion. The Fawn Lantern Project has greatly reduced such moments of heartache. Seeing more and more children on the rescue list, Meng Fang became more and more relaxed. Since August 2021, the first phase of the Little Deer Lantern Project has covered 31 counties in 15 provinces across the country, more than 410 townships and towns. A total of 38 free clinics have been held, and a total of 38 free clinics have passed. The hospital reported that there were more than 18,700 children with congenital and serious diseases, assisted 942 people in total, and allocated 14.0323 million yuan in relief funds.
Fan Chunlan went to the village every weekend, and a village doctor in a village clinic mentioned that a child in the village had undergone an operation. Fan Chunlan left a helpline number. After that, the Little Deer Lantern Project donated more than 20,000 yuan for the child's surgery. The family members are very happy, even if they can put an extra ten yuan in the bag, they will have more confidence and determination in treatment, and they will be able to give the sick child an extra meal of meat. In her opinion, the significance of the Little Deer Lantern Project is to take the initiative to send hope to children's homes, not to let mountains trap a child in need, but also to give families a hope and a future that can be seen. This may be the meaning of Xiaolu Deng's slogan, "Save a baby, light up a home"!