Journey: Xiao Ye, LRS First Beijing Surgery

1/26/2016

Xiao Ye's Profile

Gender: Male
Age: 10
First surgery: 2010 in Beijing
Family: 6 members
Grandfather, grandmother, father, mother, Xiao Ye and younger sister
Family's Annual Income: $7,600 USD
Family's Daily Income: $20.82 USD
Current Needs: Financial aid for 2nd surgery
2016 Fundraising Goal: $3,800 USD

In 2010 Xiao Ye was the first Little Red Scarf patient to need surgery in Beijing, due to his complicated heart condition. At that time, he was 4 years old and couldn't walk on his own. The doctors said he wouldn't live into adulthood without surgery, and even that was a risk.

With LRS support, Xiao Ye underwent a successful operation. We continue to follow up with his family as Xiao Ye grows up and loves to run.

Now 10 years old, Xiao Ye has been feeling tired recently. A checkup showed that his aortic valve has not healed properly and he will need another surgery in Beijing. Track his chronological journey and progress with us.

Support Xiao Ye

September 2006: Diagnosis at 6 Months Old

Xiao Ye was born on March 4, 2006. When Xiao Ye was 6 month old, his parents discovered that their baby had congenital heart disease, and it would be hard for him to survive beyond 20 years. With no doubt, this was a terrible disaster for the family. The young couple cried, but they knew that they must be brave enough to face all the things they suffered. They had no excuse to complain. How could they just keep on asking “Why?” without doing something immediately? The duties they bore on their shoulders were heavy, and it was hard for them to breathe every day. Just the strength of love pulled them on.

Hard Work Still Not Enough

So the husband left for extra laboring jobs in the city. And the wife stayed at home to do the farm work and to take care of the older and younger children. But the young couple knew they couldn’t give more to them than smiling, especially to their beloved baby. They felt guilty that they couldn’t do more for him. And this feeling became even stronger as Xiao Ye grew up.

How could they get nearly 100,000 RMB for the surgery with their annual income of 3,000–4,000 RMB income each year? They had already spent more than 50,000 RMB for the baby. And besides the family’s basic living expenses they also had to pay for the grandmother’s medical expenses, which cost more than 1,000 RMB each year.

Disease Stirs Family Conflict

Since the time of his birth, Xiao Ye’s family had been in conflict on whether to borrow money for him to undergo surgery. Xiao Ye’s grandfather did not want his son and daughter-in-law to go into further poverty because of this disease. The family was already taking care of a paralyzed, bed-bound grandmother and a four-month-old newborn. He believed that his son and daughter-in-law were still young, and if they gave up this child, they could perhaps have more children in the future. Xiao Ye had an extremely severe and complicated case of congenital heart disease, and even if he underwent surgery, the doctors said that there was still a great chance of death. Though the grandfather was trying to look out for the family's interest, Xiao Ye's father and mother did not lose hope and were determined to find a way to provide this surgery for their baby boy.

Search for Help

Xiao Ye’s mother tried to find a charity organization to support the surgery costs of her child. Because Xiao Ye’s grandfather was always against going through surgery, they fought often. When she began selling scrap iron from the house, Xiao Ye’s grandfather blocked the door and would not let customers enter. During the most severe fights, they invited all the villagers and the head of the village to serve as witnesses. Xiao Ye’s mother drafted a contract, which stated that if the surgery was successful, then she and her husband would continue to live together, but if the surgery failed, they would divorce.

June 2010: Finding Little Red Scarf

In June 2010, Xiao Ye’s mother called the LRS assistance hotline. After receiving the call, our staff went to visit Xiao Ye. The family, consisting of six people, lived in three shabby rooms. Two people shared one bed. One was a paralyzed grandmother, and the other was a newborn, a two-month old baby. There was also a little, three-year old boy who was constantly carried around by family members. He could not walk on his own and had to have someone support him. There was a grandfather who sighed in despair and two distressed parents.

Through some coaxing from LRS staff, the grandfather finally agreed to have family members take Xiao Ye to Lanzhou for further examination and treatment. The results were startling for both Xiao Ye’s parents and the LRS staff--Xiao Ye’s condition was so severe that the hospital in Gansu could not operate on him. Only large hospitals in Beijing or Shanghai could do so. LRS staff began contacting hospitals in Beijing for Xiao Ye. Once his mother found out that Little Red Scarf could support Xiao Ye’s surgery costs, she began preparing money for the trip and for Xiao Ye.

First LRS Beijing Surgery

As of 2010, 4-year-old Xiao Ye was the most complex congenital heart disease case among the children Little Red Scarf had supported. Because of the extreme complications of his heart disease, he had to go to Beijing for an examination and a difficult heart surgery. He was the first congenital heart disease patient sent to Beijing for surgery, and his experience differentiates him from other LRS patients before him.

July 15, 2010: Travel to Beijing

On July 15th, Xiao Ye and his father and mother traveled by train to Beijing. There was a three-month-long wait before the surgery could be scheduled. During this time, Little Red Scarf staff provided psychological support for their family. His mother said that the suffering she experienced over the three months had drained the life out of her. However, she claimed that she "wouldn't know what she would have been like without the support of LRS staff."

“My parents and other relatives helped us a lot, but they are still poor. We feel that we have no face to ask for help from others. All we can do is just try our best! Before we got help from Little Red Scarf, I usually asked myself what else I could do for my son. Thousands of times I dreamed that he would be ok,” Xiao Ye’s mother said.

October 9, 2010: Successful Surgery

On October 9, 2010, Xiao Ye underwent surgery. The operation took seven hours. When Xiao Ye entered the operation room, his father began smoking with his head down. Xiao Ye’s mother said that looking at his father smoking cigarette after cigarette made her feel like time had stopped. She grabbed a cigarette from Xiao Ye’s father and joined him to make the time pass faster. It was her first time smoking and she did not know how to smoke, but did so anyways. In seven hours, Xiao Ye’s mother smoked five packs of cigarettes on her own.

The well-known cardiologist Dr. Liu Yunlong performed the operation, and it was a complete success. When Dr. Liu met with the family, he told Xiao Ye’s mother, “I don’t know if it’s because of my superior technique or because Xiao Ye is very lucky, but the surgery went extremely well.”

Recovery in Beijing

As Xiao Ye recovered, he went from the operation room to the ICU and then eventually to the regular care unit. Then it was finally time to leave the hospital and go home. His mother said that their experience was like what happens in a movie.

October 27, 2010: Return Home

Xiao Ye and his family returned home from Beijing on October 27, 2010. LRS staff met them at the train station to welcome them back.

Gansu staff Yujie Yun writes, “Although I have only seen Xiao Ye and his parents on East Villagers, I recognized them immediately after they came through the station gates. Glasses sure help. We are all so happy with Xiao Ye’s extremely successful recovery. Xiao Ye’s father and mother could not express their gratitude in words. Xiao Ye’s father said that by next week, they would have stayed in Beijing for five whole months. After the long five months, the couple is very happy to have back a healthy son….We are filled with happiness seeing Xiao Ye’s complete recovery and his parents’ smiling faces.

April 23, 2014: Post Surgery Visit by LRS

On April 23rd, Guan Ying and I arrived at the Minle Township in Yongdeng County. We were here to visit a special patient, Xiao Ye. Xiao Ye is one of the patients who was fully funded by Little Red Scarf in 2010. He was the first congenital heart disease patient sent to Beijing for surgery, and his experience differentiates him from other LRS patients before him. At the time of the surgery, Xiao Ye was only four. Four years have passed since we last saw Xiao Ye. Our hearts were filled with expectation when visiting him again.

At 10:30am, we arrived at the place the family rented near Xiao Ye’s school. Xiao Ye’s family is from the mountains, where there are no schools, so all the children need to go to the school in the town near where they live. Families rent rooms near the village so their children can receive a decent education. The parents accompany their children from the time their kids enter elementary school.

Healthy and Handsome

When we arrived it was almost noontime. Xiao Ye’s mother said that he was about return from school. We were waiting for Xiao Ye in the schoolyard, and we saw a handsome little boy walking towards us from afar. Was this Xiao Ye? With a tall, healthy body, he was really different from the little boy who needed the help of adults to even walk. His mother smiled as she told us that that was Xiao Ye and that Little Red Scarf gave her such a healthy and handsome son.

We were so surprised. If we had not seen him in person, we would never have recognized the little boy who needed surgery four years ago. We asked Xiao Ye if he could participate in sports at school. Apparently, there were times when Xiao Ye had to inform his teacher about his condition, but regular physical exercise is not a problem. We asked him to walk a few step for us so we could take photos to serve as a memento. Xiao Ye started running when we asked him to walk, showing us that he is completely healthy.

We wanted to see how Xiao Ye’s wounds were recovering, so he lifted his shirt and showed us. We asked him if he looks at his wound often and if he is scared of them. His mother told us that he is not at all scared. At school, he often shows them off to his classmates and says that only heroes have them.

Xiao Ye's Mother

Xiao Ye’s mother has always been very slender. When Xiao Ye underwent surgery in 2010, his mother gave .45 kilograms of blood, and his father gave .2 kilograms of blood. His mother said that at the time, she just wanted to save her son, and did not think about anything else. After donating blood, she stayed in bed for two days and fainted once in the process. After that, she never got fat again. Even though now she eats two bowls of rice with every meal, her body is still very slender. Xiao Ye’s mother laughed as she said that now she doesn't need to diet anymore.

Family Update

This is the inside of Xiao Ye’s family’s rental house in town. We went there in April, and there was a fire inside the stove. We talked to Xiao Ye’s mother and asked her about their family’s recent condition. We were so happy to hear that Xiao Ye’s father worked in the city for the past few years to pay back his child’s surgery costs and living expenses. He has paid most of the money back. Xiao Ye’s grandfather kept several sheep to help out with the family’s expenses and to pay for his wife’s treatment. There are now eight sheep and the family has begun to treat the grandmother's illness as a result. Now the grandmother can go to the bathroom on her own and sit outside to enjoy the sun. Seeing that Xiao Ye’s family is progressing day by day, we feel genuinely happy for them. Xiao Ye’s mother said, “Since Little Red Scarf helped us cure our child’s illness, if we do not work hard and try our best, we will not be able to face the kind people who helped us.”

Time passed very fast, it was time for Xiao Ye to go back to school. We also had to go back to Lanzhou. We walked Xiao Ye to school. The boy did not stop hopping and running the entire way. His mother told us that everything is different now that his body is healthy.

Best Wishes and Ongoing Support

We wish all the best for Xiao Ye. We also hope that his hardworking family will have increasingly better lives. With your support, the Little Red Scarf Congenital Heart Disease Project will be able to help more impoverished families and more children recover. We will help smiles reappear on their faces and help them start new lives.

Editor's Note: The content through 2014 is compiled from an original blog on October 2010 and an original blog on April 2014. They were written by Yujie Yun and translated by Allison Zhang.

January 2016: Symptoms Re-emerge

After Xiao Ye’s surgery in Beijing in 2010, the doctor told his parents that the child’s aortic valve was not developing well, so they would have to observe him for a little while. If he recovered well, he would not need a second surgery. But if the recovery did not go smoothly, then Xiao Ye would need to undergo a second surgery to replace the valve.

Ever since the first surgery, Xiao Ye’s parents have been living carefully, worrying all the time that the child might not feel well. Since this past summer, however, Xiaoye began to notice that he tires easily. On the way home from school, he feels like he doesn’t have the strength to pick up his legs and cannot run or jump for any longer than a few seconds.

His mother took him to Lanzhou for a checkup. After the doctor reviewed the test results, he told Xiao Ye’s mother that the child’s aortic valve is not recovering well and that Xiao Ye will likely need surgery. Right now, they are just observing, but Xiao Ye needs to come back every 2 months for more checkups. They will plan the surgery according to the development of his condition.

February 2016: 2nd Surgery Needed

Based on the checkups, the doctors have decided that Xiao Ye will need another surgery. He will be going to Beijing again for this second heart surgery.