Little Shixiang, who is 1 ½ years old, was unconscious when he entered the hospital on March 17, 2016. He suffers from congenital heart disease and from edema, a condition characterized by an excess of watery fluid collecting in the cavities or tissues of the body. His little feet were swollen like a loaf of bread. His family noticed that his condition was worsening and decided to borrow money to take the child to the hospital. He was admitted to the hospital as a result of 4th degree heart failure, fluid surrounding the heart, and general swelling.
Whenever we visited Shixiang in the hospital, he was always being held by his mother because he was always crying or moaning. The best way to soothe him was to breastfeed him, but even then his groans did not stop.
Diagnosed with CHD at 3 Hours Old
During our conversation with Shixiang’s grandfather and father, we found out that within three hours of his birth Shixiang was diagnosed with congenital heart disease and was sent to the local county hospital. The child was lacking oxygen even in his mother’s womb. They spent a total of over 20 thousand yuan at the county hospital.
Children with congenital heart disease have a poor immune system and are prone to colds. Shixiang is a typical CHD patient. A few days after his return from the county hospital, he got sick again. His family did not know what to do, so they had to send him back to the county hospital. The diagnosis was bronchitis and pneumonia.
Before he was 18 months old, Shixiang had traveled back-and-forth between his home and the hospital seven times, spending 10 thousand yuan on average per trip. The doctors and nurses at the pediatrics department at the county hospital are now familiar with Shixiang. In this year-and-a-half, the family spent nearly 100 thousand yuan in borrowed funds for Shixiang.
Family Relocated Due to Natural Disasters
Shixiang's family had lived in Min County for several generations. It's a secluded area with very little outside information. In 2013, Min County had a large earthquake that caused the soil on many of the mountains to loosen. In the landslides that followed, the government was forced to consider moving the villagers. Shixiang’s village was on the hillside. A village like his had to be completely moved to a different location per the government's regulation. However, the government’s resettlement houses were not finished, so the villagers had to stay for one to two years in their original homes.
After the earthquake and the landslide, however, the family’s house was not very stable. The farmland could not be cultivated either. In 2014, many of the families in the villages began to move. Looking at the dilapidated home, Shixiang’s grandfather was tempted to do the same. The house was not safe and no one knew when the next natural disaster would hit. So the whole family moved to Baiyin.
Shixiang’s grandfather, grandmother, and father worked on a construction site while his mother stayed home to take care of Shixiang and his sister. The family lived in a tent on the construction site and paid the foreman 420 yuan per month of rent. Last year, three members of the family were working and earned more money per year than ever before, making a total of 40 thousand yuan. They did not hold on to a whole year’s hard-earned money for long before using it to repay the debts they owe.
At the end of 2015, the resettlement houses were finished, located in Jingyuan County of Gansu Province. The rows of houses with tiled roofs are neatly arranged. They are all exactly alike. Each house is about 60 square meters with two bedrooms, a kitchen, and a bathroom. Running water is available from the courtyard, which is a lot more convenient than carrying water down from the mountain in Min Xian. Each household has been assigned a third of an acre
However, the soil and climate here are different from Min Xian. Min Xian's climate is cold and clammy, which is not suitable for growing crops, so they were only able to grow some hardy herbs. The weather in the new village is dry with very little rain and is suitable for growing corn. Shixiang's grandfather and the other villagers will work in the fields, learning how to grow corn. In order to adapt to the new environment, soil, and water, all the villagers unified to rent out their land. Rent is 400 RMB per acre. About 600 households have moved into this village.
To be able to stay in one of the houses, the family needed to pay 30 thousand yuan. If they want to legally own the property, they need to pay an extra 120 thousand yuan. To Shixiang’s family, being able to stay in a safe home is good enough. They cannot yet worry about owning the property.
For this move, the government gave every person a bit more than an acre of land, which Shixiang’s grandfather is happy about because before moving, the entire family of six had only 1/3 of an acre of land. The move provided Shixiang's family with convenient and safe housing, but their poverty issues are still not able to be resolved in a short period of time. This will be a long road. The photos below are of the new house.
Grandmother Injured While Moving Bricks
After paying, the family moved to their new home. They had to move very far. Shixiang’s family was the last of their village to move in. After moving in, the house had no furnishings. Shixiang’s grandmother saw a pile of old bricks thrown away by other people and thought she could bring those home and make beds from them. When she was moving them back, her tricycle fell over and she broke her arm. Taking her to the hospital cost 34 thousand yuan. Looking back, the family is very regretful. If they had known that picking up old bricks would have such a heavy cost, they would have gone and bought new bricks with this money.
Shixiang's Sister Also Suffers from CHD
Shixiang’s sister Cuimei is four years old and just started preschool. Her school fee is a thousand yuan per year. His father tells us that, after seeing Shixiang’s condition, he thinks that his daughter many also have a heart problem. We asked why he thinks so, and he told us that when his daughter plays, she breathes heavily, and, after playing for a while, she needs to squat and rest for a bit. Her heart beats really fast. We asked the father if he has ever taken his daughter to do a checkup, and he replied with embarrassment that because his son could not even walk, he thought the son’s condition must be more severe. Because his daughter could walk by herself, she must have a lighter form of the disease, so he has not taken her to do any checkups. Our hearts were heavy after listening to the father’s account, but what Shixiang’s grandfather told us next made us sadder.
Shixiang's Brother Died from CHD
His grandfather said that Shixiang had an older brother. When the child was just born, he was purple. They had to send him to a hospital immediately, but the doctor told them that the child was severely ill and they did not know what the illness is, so the family should take the child to one of the big hospitals in Lanzhou for a checkup. The grandfather and father took the child to Lanzhou. And, after going to a major hospital, all of the doctors told them that the child had a severe form of congenital heart disease and could not be operated on. Seeing the pained expression on the child’s face, the grandfather and father still hoped that the hospital would take in their child and treat him. They were hoping for a miracle to happen. Unfortunately, the child passed away at four months old.
In the short four-month span of time, in attempts to treat the child and hoping for a miracle to occur, the family spent over 90 thousand yuan, all of which were usurious loans.
Shixiang's parents were married in 2011. Shixiang's mother is only 21 years old. She has already given birth to 3 children and has found out that they all had congenital heart disease, one after the other. When she was not even 20 years old, she had already lost one of her children because of the disease.
Shixiang's father is 24 years old. He is the silent one in the family. He has the best relationship with their daughter.
We took Shixiang’s father and mother to see the doctor. Since their children all have heart problems, could it be that one of the parents has a problem as well? Dr. Liu listened to their hearts and said that both had healthy hearts with no major problems. So then why did their children all have congenital heart disease? Shixiang’s parents are young and have had three children. They are unsure. We also want to help them find the cause of this problem.
Large Debt from Hardships and Health Problems
In a short four years, the family has been through a lot of hardships, including illness, injuries, and moving across the province. Their loan payment has stacked up to 270 thousand yuan (about $41,600 USD). These debts are enough to bring down the spirits of any member of the family.
We are helping the family with a donation of $1850. Thanks to support from Grandma Chu’s Love Fund and Henry & Lisa Chang, we have already received $1500 of contributions for Shixiang’s family.
Shixiang is still in the hospital for treatment. Will you help give his family hope?
Original article written by Yunyun, translated by Allison Zhang, edited by Carolyn D.
Update on March 25, 2016
Around noontime today Shixiang’s older sister came to Lanzhou. In the afternoon LRS staff Yunyun and Guan Ying went to the hospital. The ultrasound machine was being used in the operating room all afternoon, so we weren’t able to have Shixiang’s sister get an ultrasound diagnosis. We asked Dr. Xing to listen to her heart with a stethoscope. Dr. Xing said that the child has a big heart murmur and definitely has congenital heart disease. But she still has to have an ultrasound diagnosis. We can’t do it today, so we’ll have to wait until Monday.
We arranged for Shixiang’s grandfather and older sister to stay in a hotel. Because the ultrasound machine was unavailable all afternoon, we have to wait until next Monday to confirm the diagnosis. In this case, Shixiang’s family will have to spend 3 nights in the hotel. Originally we had budgeted for them to stay only 1 night, but we’ll have to add 2 more nights of hotel expenses into the budget.
Shixiang’s current condition is not optimistic. The doctor has already prepared to discharge him from the hospital tomorrow. He has very severe pulmonary hypertension. The doctor suspects it is a kind of case that would usually result in symptoms like blue lips.
When Shixiang entered the hospital he was suffering from severe heart failure and edema. He received treatment to reduce the fluid in his body and relieve some of his symptoms, but there was no way to help relieve his cardiac malfunction. This means Shixiang is always facing the possibility of a sudden death. We continue to discuss ways how to best help this family.
Update on March 28, 2016: In the Lanzhou Hospital
Shixiang’s older sister is named Cuimei. She is almost 4 years old. She is good and obedient and loves her brother very much.
This morning she had an ultrasound for her heart, confirming her congenital heart disease diagnosis. She has ventricular septal defect (VSD), a hole in the wall separating the two lower chambers of the heart. Her defect is 6mm. There is a chance to operate on her.
Although Shixiang's parents have been suspecting that their daughter also suffered from congenital heart disease, after knowing the truth, they were struggling to accept this fact. The father broke into tears and stayed in this hunched over position while we were there.
This is Shixiang's grandfather, who is the central figure of the family. He is a key decision maker, and the only one besides Shixiang's mother who can hold Shixiang. His grandfather supports this family. To cover the medical costs of the two children from birth to each hospitalization, the parents would always rely on the grandfather to borrow money.
When Shixiang's grandfather learned his granddaughter Cuimei also suffers from congenital heart disease, silent tears rolled from his tightly closed eyes. At that moment, his heart was bleeding. His older grandson died due to illness, and the little grandson that he held in his arms was in urgent need of treatment. However, no specific treatment plan was implemented due to the complexity of his heart problem. The only seemingly healthy granddaughter also did not escape the clutches of congenital heart disease.
While we were talking to her family at the Little Red Scarf office, Cuimei was too young to understand the concept of congenital heart disease. She saw her grandfather and mother crying and she was unable to conceal her grief. Cuimei threw herself into her mother's arm and burst into tears.
When she saw her father was unhappy, she ran to her daddy to hold his face and tiptoed trying to kiss her daddy. She wanted to make her father happy.
The family wants to wait on giving Cuimei surgery for now because they want Shixiang to have his checkup and surgery first. The grandfather and father think that Shixiang’s situation is more critical, so they want to treat him first.
When she saw us taking photos, lovely Cuimei gave us a beautiful smile. Then she started to hug her brother who was crying, for fear someone might take her brother away from her. Watching his daughter guarding her brother, the young father squeezed an imperceptible smile. Shixiang's prognosis is very poor. The poor heart condition will be with him for life. There is a possibility of sudden death anytime.
Today when the family found out about Cuimei’s diagnosis, they were understandably very upset. We were also very sad. In this one family, 3 of their children all have congenital heart disease. One of the children has already passed away; Shixiang’s situation is not optimistic; and Cuimei has just been diagnosed. The family is struggling emotionally.
Cuimei has the opportunity to have surgery, but her brother's life is more at risk. For now, he is in more need of surgery. Faced with this misfortune, this young couple has lost their sense. To live or die, this is a problem. No one can decide.
The doctor suggested that Shixiang go home for now and take medicine to lower his pulmonary hypertension. Then after a month, have another checkup. Shixiang’s family said they’ll go home and think about it. After a month they’ll come back for the checkup. At that time, they might also consider giving Cuimei surgery a month after that.
We talked with the family and asked them to call us sometime around April 18th to let us know their decision. The long hospital corridor seems unending. This will be a tough decision for this family, no matter what the choice is. We can only quietly stay with them for their journey.
Update on April 28, 2016: Visit to Shixiang's Home
Shixiang's new house is not very big. There are three rooms. In the middle of the house is the living room, the one on the left is their grandparents' room, and the room on the right is Shixiang and his parents' room. Each room is about ten square meters. The house is large enough to accommodate this family of three generations.
The kitchen is about 8 square meters. The walls are not painted. Besides stoves and some cabinets, there is only enough room to accommodate one person. Their diet is very simple. Shixiang's grandmother simply cooks noodles with some vegetables.
Shixiang has just returned from Lanzhou for treatment for pneumonia and congestive heart failure. He looks a lot better now, but he still needs to be held by his mother all the time. His mother even needs to hold him while she is eating. Every time when Shixiang takes a breath, his throat makes a sound like a hiccup.
Cuimei, Shixiang's older sister, is smart and adorable. Her heart condition is on the mild side. She is able to run, but with each run she needs to kneel down to rest.
Cuimei also needs to have heart surgery. The family has decided to postpone her surgery because of the urgent need of her brother Shixiang. At first we thought the family favored Shixiang, so that's why they wanted to save him first. However, during our family visit we realized they love Cuimei just as much. They can only choose to treat one child because of their financial situation, and Shixiang is in more urgent need of surgery.
Shixiang's father said in recent years they got used to living in the hospital. Often times their child would stay in the unit while they just slept in the hospital corridor or on the bench in the hallway. He does not remember how many times he has gone to the hospital. The family's debts are like a snowball rolling down a hill, progressively getting bigger and bigger, but the condition of their child has not improved much.
The doctors at Lanzhou told them that Shixiang is not able to have surgery because of his high pulmonary pressure. They are not willing to give up, so they are planning to go to Xi'an for further treatment and another medical perspective.
Shixiang's mother said, "I don't know why all my children were born with this disease. I have already lost one child and do not want to lose another one. If possible, I would rather use my own heart to save Shixiang's life."
After his discharge from the Lanzhou hospital, Shixiang will stay home for 3-5 days, where he is more comfortable than being in the hospital or traveling. The family will try to borrow some money then go to Xi'an afterwards. The family does not get together very often, so whenever they are together, the time they spend with each other seems more precious. We gave them the photo that was taken at the hospital. We asked Cuimei which one she liked, and she pointed to the one with her mom and little brother.
Her mother's love and her brother are both important in Cuimei's heart. The family can only be complete with the presence of the mother and brother. Her parents and little brother may embark on a long journey tomorrow to seek treatment. Cuimei will once again be waiting for their return in her loneliness and hope. Little Red Scarf will keep in touch with Shixiang's family, hoping to give this suffering family more help. We also hope God will show His mercy to the people He loves!
May 31, 2016: Shixiang Passes Away
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