Little Red Scarf is in Lanzhou, Gansu and Yunnan province and provides financial support and encouragement to children suffering from congenital heart disease. In addition, they provide families with post-operative care and help the children sustain a healthy lifestyle.
On November 19, 2014, I received a phone call from a colleague on Susan’s phone. She informed me that there is a screening in the local countryside for children with congenital heart disease. She also told me that due to the fact that her family was extremely family busy and missed the opportunity to follow through with the previous operation arrangements. After some time, they did not inform the nonprofit foundation until they actually transported to the hospital due to the complications of the condition. The family doctor requested for us to prepare ninety thousand yuan for the surgery contingencies. This type of money was an astronomical figure for a poor farming family. They were just about ready to give up the treatment when they were presented with the amount of money that had to provide. They lingered in the hospital, waiting for their child to be discharged from surgery. Throughout the waiting room, it was ostentatious that numerous mothers and their work colleagues were breaking down into tears when they recognized the positive outcome for their child’s congenital heart disease screening. The teachers tried to seize their work colleagues’ hands, but it did not help so much in the negative situation. Now that the foundation was finally aware of the child’s situation, I went to the hospital on the afternoon of November 20, 2014. According to the number of beds before me, I was able to tell that there were a lot of cardiac surgeries. I walked down the corridor, only to see numerous Muslim and Dominican women wrapped in cloths, underneath the gloomy light, busy telling their children’s fathers back home the medical formalities. Amidst I spotted Jiajia, a pale and beautiful girl hidden amongst layers of clothes.
Jiajia’s mother introduced me in tears the five people that stood next to her, and informed me of how they own three acres of land, in which were densely populated with corn, which made their lives increasingly difficult. This year, their mother’s sister passed away from leukemia, her brother had to leave to the city for work related issues, which may be able to garner one acre of land, but not much otherwise. Their economic and financial issues were through the roof, as they had to pay a monthly rent of 1,000 yuan for their household, and their gross yearly income racked up to be around approximately four or five thousand dollars, excluding various costs. Their disposable income was expected to be somewhere around two or three thousand dollars. I questioned Jiajia’s mother if they could make a more lucrative business by growing higher income crops such as tobacco or vegetables. Jiajia explained that her mother was unable to travel to the local market due to high transportation costs in order to harvest vegetables, and the crop species were always shipped out, and never sold, which made it even more difficult for her family to acquire the agricultural resources they so desperately necessitated in.
Because most of the Muslim immigrants worked locally or close to home, and often leave their residence due to different eating habits, it was also extremely hard to find a well-paying job. Jiajia’s mother also had to balance taking care of three other children at home. She was finally able to find some help amongst a group of farmers. Any farmer from this group is able to make around twenty or thirty dollars on a daily basis. However, with a child’s medical and incidental expenses throughout their lives, it is a cultural norm to lose track of that number. Jiajia later learned that due to the fact that the poor often needed to take medicine and injections in order to combat the many illnesses that target them, congenital heart disease being one of them. She said that the medical industry should pay more attention to some of the commonwealth. Village doctors have to spend approximately 2 or 3 thousand dollars annually just to pay for the cost of drugs, and are hardly reimbursed each year when taking care of the village. Village doctors also frequently have to account for treatment for children, document their family’s monetary stability, in addition to other responsibilities.
In the previous year, Jiajia’s brother had to undergo hernia surgery due to a series of several unfortunate accidents. This medical treatment cost more than 5000 yuan. Her younger brother also required a tuition fee of $600 per semester during his kindergarten school year. Because life is so difficult, her family can no longer pay $100 a month for food, so her family was unable to send her younger brother to school until the next semester, in which he was finally able to complete his kindergarten studies.
Jiajia’s elder sister is currently in fourth grade, while she is in the first grade of her elementary school education. They both highly enjoy compulsory education. But due to a variety of related expenses in addition to their academic tuition, roughly 1,000 yuan is required to make any form of schooling possible.Jiajia’s parents labor diligently on a daily basis in order to support their family and do whatever they can to take care of their three children.
When Jiajia was born, she experienced numerous symptoms of hypoxia. Once she turned four years old, she went through a screening at a local county hospital in the countryside, and discovered that she was suffering from congenital heart disease. The doctor recommended surgery, but due to their family’s impoverishment, there was no way they were able to provide their daughter with the effective treatment. This year, Jiajia is now seven years old and underwent another congenital heart disease screening examination in the countryside, and Jiajia informed her parents that her condition has not improved. She was determined to acquire the money necessitated in the completion of her operation. Jiajia’s mother first received notice for the requirement of Jiajia’s surgery when she returned home, but she unfortunately missed the opportunity yet again. Once she missed the deadline, policies state that the local hospital is unable to provide Jiajia with the adequate treatment for her congenital heart disease until the subsequent year. The travel expenses are also another obstacle to maneuver over, so Jiajia’s treatment was postponed further into October.
The ground in which Jiajia’s family grew their corn was also ready to harvest, but there was simplistically no time to reap the crops due to the fact that a lot of the children were suffering from congenital heart disease. They decided to sell their grandfather’s cattle from their home, and was somehow able to manage to scrape together 20,000 yuan. They were able to take their children to Kunming in order to receive treatment. But when the family received news that the surgery costs 190,000 yuan, it seemed as if there was no light at the end of the tunnel. He was told that he was an ignorant father. That night, Jiajia’s father squatted on his sheets, helplessly crying for some form of assistance. Jiajia was too scared to call for help in her grandfather’s home. “My Dad was crying,” she said. “I did not know what to do at that time. That night, my family did not dare hold back to live in fear, but even so, we were still unable to afford the cost.”
Due to the fact that Jiajia’s family was Muslim, halal foods were reported to be more expensive in Kunming. Jiajia’s mother and siblings were eating vegetarian lunches for approximately $15 each. Jiajia’s mother always gave her children the first priority, by allowing them to dine first before she even got the chance to eat. While they were hospitalized under these circumstances, they were sent fruit, wool slippers, toiletries, and other helpful living items. They just wanted to minimize the burden on the family.
While her mother tried to comprehend the situation, Jiajia placed one hand onto her while she quietly poured me a cup of hot water. She referred to the beverage as “sister, drink water”, and I was able to see her mother beginning to tear up. Her lips began to quiver as she cried out in agony. I tried to restrain her as she sobbed in misery.
I always watched Jiajia’s hands, and tried to figure out why she was always wrapped in so many clothes. I thought about which disability she possibly had, due to the fact that her mother never informed me of the relevant circumstances. I tentatively asked Jiajia’s mother what exactly was wrong with her child’s hand. She informed me that it was a vein pipe. Once it was necessary to replace it, the nurse hides the hand in Jiajia’s clothes in order to protect the pipe, in an attempt to save some more money for the surgery. As I held Jiajia’s hand, I noticed that it was slightly swollen, and she definitely felt some pain even I applied minimal pressure onto it. I told her mother and her children that the children needed to replace the pipe on a regular basis, and it cannot be used as a plug due to the fact that it is not medically appropriate. I soon learned from a colleague in Gansu that it was indeed necessary to constantly replace the pipe. The possibility of leakage could lead to complications such as needle infusion, in which an arm disability can occur. Fortunately, I was able to educate her mother to ask for the nurse to have the vein pipe removed and replaced.
On November 24, 2014, Jiajia’s father was able to process the necessary formalities and paperwork with the Foundation Well. I transported myself to the hospital for a secondary visit in order to collect the required information, and to allocate Jiajia’s doctor in order to find out more about her condition. Jiajia’s segment direction doctor told me that the child’s illness was extremely complex, and that there is a slight risk for cyanosis, a condition that necessitates in an earlier surgery. Previously determined as the atrial septal defect, a follow-up CT examination demonstrated that there may be an additional suspected ventricular septal defect. The B-director of the secondary inspection examination determined another layer onto Jiajia’s surgical plan. Once Jiajia was informed that the nonprofit foundation is able to monetarily support her in terminological reference to the cost of her treatment, she developed a more easygoing and relaxed mood during her stay at the hospital. Because the economy was extremely difficult to work through at the time, my colleagues also negotiated with Gansu to provide further subsidies for travel expenses. Jiajia’s parents, however, declined the offer, and said that they were extremely grateful for the payment of their medical expenses, and did not want to further trouble well-intentioned people.
The day I was supposed to return home, I surprisingly discovered a bag of apples in my possession, which were designated for the consumption and devouring of patients who were reluctant to purchase nourishment for their own. I politely declined them, but Jiajia stuffed them into my luggage nonetheless.
Due to the fact that the Yunnan Province possesses an extremely large hospital with vast examinations and treatments techniques, the authority that this establishment wields is incredibly large and tremendous. Many checks are required in the couple of months prior to Jiajia’s surgery. Her heart’s B ultrasonic examination alone registered to use up approximately two days worth of time, and even after the work of various coordination doctors, it still took an entire week to receive the results. Jiajia’s operation was scheduled to take place on the Wednesday of December 3, 2014.
On the day of December 1, 2014, I provided Jiajia with some nourishment from Hongjin. Unfortunately, this meal caused her to contract a fever in the middle of the night. The doctors quickly arranged for her to have a blood test, but the results did not come out expeditiously, unfortunately. I saw that the child’s spirit has fallen, as her body and face appeared to have a rash, and some patches of her skin were covered in a range of blisters. Her heart was also appearing to be negatively affected by the sudden sickness. In the evening, I learned that Jiajia was diagnosed with chickenpox, and had to have her surgery postponed for another time.
Doctors arranged for Jiajia’s discharge the subsequent day, but feared for the fluctuation of Jiajia’s physical conditions. They decided to let her remain in the hospital for observation purposes. After a week of anti-viral adjuvant therapy with the objective of controlling the disease, the doctors decided to discharge Jiajia home in order to recuperate during her recovery period on December 8, 2014. Once I returned to the hospital, Jiajia’s smallpox has turned black, and has dried up. When I saw the adorable smile on the cute young girl’s face, my spirits were also lifted. However, I noticed something peculiar-- her fingertip started to have a purple color.
On the Christmas of December 2014, I received a phone call from Jiajia’s father. They transported to the hospital only to discover that it was closed for the holiday season. There was no way to return until the year of 2015. Jiajia’s father brought some of their own soil eggs in an attempt to replenish me. I kept in mind that the family was already struggling economically and financially, and quickly declined his food offer. On January 5, 2015 Jia Yun stayed overnight at the hospital’s surgical ward once more. When I went to the hospital to visit, I saw that Jiajia was sleeping with an oxygen tube looping through her nostrils. There was no sign of any hypoxia blush on her face, but there were several scars on her skin from the chickenpox rash.
When I was back in the hospital, Jiajia’s mother told me where to go. After visiting another child whose family was preparing to apply for funding, I witnessed Jiajia’s mother chat with that particular child’s father, who mentioned that in her household, she did not possess a lot of knowledge on the phenomenon of congenital heart disease. Some of the families brought along their children in order to interact, play, and socialize with Jiajia. However, a lot of the other families were both hesitant and reluctant in allowing their kids to speak with Jiajia because they were fearful that their children may contract on infection. Jiajia started to hear them, and proceeded to cry with grief, a feeling that she soon became gradually accustomed to. Jiajia said the child’s mother spoke those words with her own mouth, and I comforted her by saying that these sorts of people are unfamiliar with her disease, and a lot of people tend to move away from the phenomenons that they do not understand, her being one of them. She listened to me as I spoke, her red eyes ceasing to water. I did not know in all my years of volunteer work that people could be so ignorant and inconsiderate to the feelings of those around them, even when Jiajia’s family has encountered so many grievances already.
Once I was ready to depart, Jiajia’s mother brought out a bucket full of eggs into my hands, and told me that had nothing but her soil eggs, and convinced me that I should take it. There was a lot of to and fro between us, until I finally capitulated to her demands and accepted the present. Jiajia’s illiterate mother in addition to Dafan and even hospital department managers were heartbroken to see me walk out the door, afraid to be brought back. All of my memories of that day includes Jiajia’s father running with large bags of luggage, heavy buckets of eggs, and a heart filled with apprehension, hope, gratitude, and the strength to cope with his daughter’s pain and suffering.
Following the days before her operation, the last period of hospitalization has been finalized. The surgery was nearing, and Jiajia was also allocated time to recover in the hospital. She was scheduled for a routine preoperative blood examination on January 7, 2015. Jiajia successfully completed the surgery. Jiajia’s mother informed me that Jiajia was given anesthesia in order to feel no pain, and they began to puncture her skin with a needle. It was at that point that she was unable to watch any longer. Jiajia said that the doctor’s intense emotions were not particularly necessary, but other than that, she felt as if she was on the road to recovery. Subsequent to the surgery, Jiajia was doing very well with her treatment, and the situation was overall relatively stable. On January 15, 2015, Jiajia would finally to be able to be discharged from her hospitalization.
Jiajia’s postoperative body was still relatively empty, and her voice was rather thin, but you could see in her hands and fingers that there was a rosy, healthy glow, a shining light for the near future. She is now a generally healthy child, and can now be a normal kid like everything else, and is now eligible to participate in physical education and receive her registered medical injections from the village doctor. When shooting the photograph displaying Jiajia and her family with the donation sign advertising the Transparent Fish Fund, she revealed an extremely happy smile. There are no words for this particular moment in time. The camera captured the perfect time frame.
However, there were some rural cooperative medical reimbursement issues, as Jiajia’s discharge procedure was not successful. Due to the fact that her illness belongs to a complex congenital heart disease, myasthenia specifies policies that she cannot enjoy 70% of her subsidies. Jiajia had to transport from his household and Kunming for several times. Finally, 50% of the ordinary commonwealth cannot receive their subsidies, only to return for local reimbursement. At last, Jiajia and her father were able to negotiate a compromise. Jiajia’s father was now able to provide the first part of the monetary demand, and the rest of the costs were all covered by the Little Red Scarf nonprofit organization. The remainder of the money could then be utilized to save other children. In fact, my colleagues and I are working on a project to return excess money. We were hopeful that this objective would succeed. However, another colleague informed me that she has never encountering a reimbursement willing to return the money after the precedent.
Yet after a few days, I received a phone call from another colleague, who told me that Jiajia’s father was able to come up with the money themselves to pay for the reimbursement fee. The extra five thousand dollars were returned to the nonprofit foundation, and she did not think that this was the first case in her career during this encounter.
Once I put down the phone, my mind could not help but emerge from Jiajia’s father’s shadow. He and I made an appointment to transport ourselves to the hospital building in an attempt to wait to save time; Jiajia has been handled well since the time of her discharge procedure. I met once more with Jiajia’s father to pick something up, but did not leave. I sat silently for a long time until I was told to go back and pack up, or else I would be late for two days if I did not immediately depart in the early morning. We realized that the coachman was waiting to accompany us. He was just another ordinary peasant who was not particularly cultured. He complained to me about his bad luck, and distressed over the tedious hospital formalities. Furthermore, he used his time and much of his language to express his gratitude for the funding of ill children. Five thousand dollars could be utilized to provide for their eating and drinking situations, as well as toiling a maximum amount that could be earned throughout the year. However, he told me that as he was about to send out the money, his younger son developed a medical emergency by fracturing his leg. His reason was extremely simplistic. He told me what I should do in order to follow through with this plan. Believing that he was a well-intentioned good man and taking into the account that the money was not actually for my benefit, I wished him the best of luck for a smooth, happy journey and the recovery of his family.
I learned a lot from this experience. Mostly that we should not only occupy our own minds, and that we must collaborate together in order to fix underlying issues. Not everyone is able to ask for the help they need, especially if they feel embarrassed or humiliated by the action. Jiajia’s father showed his gratitude for the well-intentioned people who funded the cure of his daughter, Jiajia’s congenital heart disease. I also thanked him by giving me hope that any ordinary individual or person is able to accomplish these paramount tasks. The smile he gave me provided me with a small, warm spark to move on with my life in order to pursue more reasons to help other people in addition to the community around me.
Original article written by Qianhua Liu, translated by Maggie Li and edited by Yanyan Zhang
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