I first met Jinhui in the demonstration room in Lanzhou University's First Hospital. He was standing shyly behind his father and older cousin, taking in the foreign surroundings and looking lost. When the little guy stepped before me, I could easily tell that his lips did not have a healthy hue. I asked Jinhui’s father how old the child was and if his lips were always this color. Jinhui’s father cautiously told me that the child is six years old and has always had lips like this, sometimes every more purple than today. Clearly, I knew from his response that this father has known for a few years that his child has congenital heart disease.
Jinhui's father told me that they are from the Longnan Wudu District in the town of Luotang. When Jinhui was two, he took the child to Xijing Hospital for a checkup. At the time the doctor at the hospital told them that the child had congenital heart disease and needed surgery. Jinhui's father originally thought that the surgery would only cost 20,000-30,000 RMB, but the doctor said that the surgery costs for this child would be at least 100,000 RMB ($15,300 USD). The father only had 3,000 RMB in his pocket that he had borrowed. The 100,000 RMB surgery costs discouraged him from letting his child have surgery. From then on, except for sending his child to the hospital for pneumonia treatment, he has not taken his child to any hospital for any checkups.
Jinhui’s older cousin sent these photos of the house to me via WeChat. Little Red Scarf applicants are required to provide photos of their living place. The people in the photos are Jinhui’s mother, sister, and grandfather.
The house is over sixty years old and is permeable to wind and rain. The sun shines through the roof into the rooms, and the walls are mottled and old. In the countryside, the houses and yards are the most direct telling signs of the family’s financial situation. Through these photos we can have a basic understanding of the living conditions of this family.
Jinhui’s father told us that there are five members in his family. His father is 75 years old and has suffered for 5 years from a cerebral infarction. He takes medication to keep his condition stable. Right now, the most apparent symptom is his shaking hands. They are so unstable that he cannot hold chopsticks and thus cannot feed himself, requiring a person by his side at all times.
The mother is at home taking care of the grandfather. Jinhui’s sister is four years old. Because their mother has never registered with the Civil Affairs Bureau, the little sister’s authentication process has also been filled with obstacles. The mother never went to school and is illiterate. The father graduated from elementary school, does not have any technical skills, and works miscellaneous jobs after finishing the year’s work on the farm. Money earned from his miscellaneous jobs is the main source of income for the family. The family also relies on the national subsistence allowance, receiving 2,000 RMB ($300 USD) each quarter. The money from the subsistence allowance is used mainly for purchasing medication for the grandfather.
The acre of land owned by the family is all mountainous land. They would plant some corn, wheat, and potatoes each year. But because there are lots of hogs in the area that eat the crops, sometimes they would not be able to harvest anything at the end of the year. The land off which the family hopes to live cannot even feed the entire family. Even though the situation is bad, the family does not want to abandon the land, so they plant anyways and hope for a lucky year. Each time the father returns from working away from home, he first buys two bags of flour from town.
Jinhui's Condition Worsening
I asked Jinhui’s father, “Why are you taking your child to the hospital now?” Jinhui’s father told me, his face full of fear, that he was afraid because now the child’s lips are getting purple. While Jinhui used to play around before, now he has trouble walking and can only take a few steps at a time before resting in a squatting position. Now he does not even like sitting down and often crouches in the corner.
Jinhui's "Photo Shoot"
After filling in the Little Red Scarf application form, I prepared to take a photo for Jinhui. Seeing me take out my camera, Jinhui’s father became very careful. He thought that Jinhui was not standing straight enough and that his hands were not in the right place. The father immediately ran to Jinhui to adjust his hat, straighten his posture, and place his two little hands on the sides of his legs.
I actually wanted to stop Jinhui’s father because I thought getting the most natural and carefree photos of the child was best. But seeing how serious the father was, I did not want to interrupt. Taking the photo according to how Jinhui’s father wanted it to be, I captured a serious little Jinhui.
I recommended that Jinhui and his father take a photo together. Before I pressed the shutter button, Jinhui could not help but smile a little. His father turned and told Jinhui to stop smiling, put his hands in the right place, and look at me. Hearing his father’s directions, Jinhui immediately held back his smile.
As soon as I wanted to take another photo, however, Jinhui smiled again and grabbed his father’s arm. The camera recorded these subtle nuances in the father-son dynamic. In these photos, Jinhui has a beaming smile, while his father looks extremely worried.
Jinhui has a very complicated form of congenital heart disease. His family has taken on 40,000 RMB ($6,150 USD) of high-interest loans to take him to the hospital. The child’s condition cannot be cured, but rather can only be effectively treated with two consecutive surgeries. The doctor’s initial estimate is that the first surgery will cost around 50,000 RMB ($7,700 USD). I listened with a heavy heart, and I am sure that his father must have been feeling much more complex emotions. At this point, he has put all his hope in Little Red Scarf. If LRS can support his child’s surgery, then the child will at least have a chance at leading a healthy life and his family’s crisis can be resolved.
Jinhui’s application was approved very soon. Little Red Scarf wants to support Jinhui and is more than willing to help his family take on the financial burden. After hearing the good news, Jinhui’s father looked a lot less worried.
Before the surgery, Jinhui caught a cold. When we went to visit him in the hospital, he was on an IV and looked tired. His cheeks and lips had changed from light purple to a darker hue. We found Jinhui’s doctor to learn more about the surgery. His doctor told us that the first surgery is a bilateral bidirectional Glenn Operation, to help the child overcome the lack the oxygen. The second surgery is a cavopulmonary connection operation, also known as the Fontan Operation, a palliative surgery. Neither of the two surgeries will cure Jinhui completely. Their aim is to solve his problem of not having enough oxygen so he can improve his quality of life.
Jinhui’s surgery date was set. Because his surgery required a large amount of blood transfusions and there was a shortage of blood in the bank, his immediate family had to donate blood. Just his father's blood alone was not enough, so his father called home, and his mother and uncle came immediately to Lanzhou. It was the first time Jinhui’s mother had left home.
When I was taking a photo for Jinhui and his mother, Jinhui was lying happily in his mother’s arms, while his mother looked a little nervous and shy. I asked Jinhui’s father if the family had ever taken a photo together, and he told me, embarrassed, that this was the first time they had ever taken a photo together.
Jinhui underwent surgery on March 29, 2016. Three days after the surgery, my colleagues visited the children in the ICU, and Jinhui was one of them. He seemed to be doing well and could be transferred to a normal ward very soon.
Recovery and Smiles
After Jinhui was transferred to a normal ward, we sent him some nutritious snacks, a Little Red Scarf backpack, and the photos we took of him when he was in the hospital. When little Jinhui accepted the presents, we glimpsed his friendly, cute side, showing us the innocent joy that children his age should exhibit. Seeing his smiling face, we could not help but take photos to commemorate this moment.
Jinhui is a bright little boy. Although he is not yet completely healthy, his first surgery allowed his heart condition to improve. The fact that he is healthier now than before makes us happy. Even though he will face a second surgery two years later, we still believe that he and his family can face the situation with courage.
Jinhui, I would like to tell you that although life has its regrets, please believe that the future will be brighter.
The recovery process after the surgery went by very fast. Within one week, Jinhui was discharged from the hospital. Looking at the camera, his father and mother are no longer worried but rather smiling in a more natural and relaxed way. Only when their stress was relieved could they express such genuine emotions.
Thanks to Little Red Scarf, Jinhui has been given hope and opportunity. The support has built a bridge of kindness in his life and delivered love and hope to his family, allowing them to smile with relief.
Original article, entitled "Although life has its regrets, please believe that the future will be brighter," written by Yun Yu Jie, translated by Allison Zhang, edited by Carolyn D.
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