Journey: Cheng Xiang

Little Red Scarf is in Lanzhou, Gansu, and Yunnan provinces. We provide financial support and encouragement to children suffering from congenital heart disease. In addition, we provide families with post-operative care and help the children sustain a healthy lifestyle.

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Follow the chronological journey of Cheng Xiang, a 2-year-old boy who had one of the most severe cases of congenital heart disease we've ever seen.

We first met Cheng Xiang in May 2015 and immediately approved him to apply for surgery. Because of his severe condition, Cheng Xiang required two surgeries.  Now in summer 2016, we've discovered he needs a third one.

Read along as we recount Cheng Xiang's story with real-time updates. 

September 2016: Waiting for the Third Surgery

In August Cheng Xiang and his parents went to Beijing for his third surgery. However, the hospital had so many people waiting for surgery, Cheng Xiang had to register for the waiting list. He got number 129. 

While Cheng Xiang and his parents were in Beijing, they got a phone call that Cheng Xiang’s grandfather was not doing well. So after Cheng Xiang registered for the waiting list, the family quickly returned to their hometown. Cheng Xiang’s father is currently taking care of the grandfather. 
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Every month Cheng Xiang goes to the hospital in Lanzhou for a checkup. This includes blood tests and an ultrasound. Once the hospital in Beijing is ready for Cheng Xiang, they will call the family to let them know he can come again for the next surgery.

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August 8, 2016: Cheng Xiang Needs Third Surgery

At the end of July 2016, Cheng Xiang’s father called our Lanzhou staff to give an update on Cheng Xiang’s situation. The 2-year-old’s heart rate has been slow recently and he’s been exhibiting other symptoms, so they took him for a checkup in Lanzhou on July 27th. Based on the Lanzhou checkup, the doctors suggested he go back to Beijing for a follow up since his 2nd surgery was done by the experts there. The Beijing doctor suggested Cheng Xiang be treated as soon as possible with another surgery. The estimated cost for the 3rd surgery is $18,000 USD.
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Cheng Xiang’s family is still in heavy debt from the 2nd surgery. Now that Cheng Xiang needs a 3rd surgery, their burden is even heavier. We’d like to raise $3,000 USD to help subsidize Cheng Xiang’s 3rd surgery.

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December 21, 2015: Checkup Shows Successful Surgery Results

Thank you LRS for saving us during our most difficult time. You reached supporting hands out to us. Your love was the light of hope that enabled Cheng Xiang to go further.
Cheng Xiang's father

Since Cheng  Xiang’s second operation in September, which took place in Beijing, he has been resting and recovering over the past few months at home in Lanzhou. We’ve kept in touch with Cheng Xiang’s family.

Cheng Xiang’s father had called during the recovery period to let us know Cheng Xiang had caught a cold, which caused an inflammation of his heart. The condition couldn’t be treated by the county doctors, so we contacted the experts in Beijing so Cheng Xiang could get the medicine he needed to treat his condition.

On December 21st, Cheng Xiang’s father called with good news. Cheng Xiang had gone to the hospital in Lanzhou for a checkup. The results of the two surgeries were successful, and the inflammation of his heart was also much better!
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Now Cheng Xiang is 22 months old. He can walk, he has a rosy face, and he has a lot more energy. Seeing him grow and develop every day, Cheng Xiang’s mom said her tiredness has turned into happiness. 

Thank You from Cheng Xiang's Father

Dear Mr. and Mrs. Chao and Little Red Scarf, 

I am Cheng Xiang’s father. I want to express my sincere gratitude on behalf of the whole family. Thank you for your help when we were in a very difficult situation. If the doctor saved Cheng Xiang’s life, your unselfishness built a bridge that enabled Cheng Xiang to walk to his second life. Your love kindled hope for Chang Xiang to sail to the furthest place. 

I had been nervous about going to Beijing [for Cheng Xiang’s 2nd operation], but the result was pleasant. The process was not smooth, but thanks to the accompaniment of the LRS staff in Beijing and Lanzhou, we were cared for and encouraged in a way that really touched us. Cheng Xiang is lucky. With your support and care, we were able to pull through the difficulties. With your love, I made up my mind to save my child and was strengthened in my inner being to overcome difficulties. Now Cheng Xiang has been treated and discharged from the hospital. We want to sincerely thank you. We will keep your love in mind forever. 

Though I want to thank you a thousand times, I thought of a saying: “Life is like a candle, which gives heat, shines light, and gives people brightness and warmth.” The Chao Foundation and Little Red Scarf are the light of the candle that warmed us. Happiness comes from giving instead of receiving. I will educate my 2 children on how to love people and nurture their loving hearts, so that they will return love to needy people when they grow up. 

Let the world be full of love. Thank you again for your help. May everything go well for Mr. and Mrs. Chao and Little Red Scarf. 

Best wishes to Mr. and Mrs. Chao and all the LRS staff,
Cheng Xiang’s Father
September 24, 2015

Note: The original Chinese thank you letter can be read on the original blog.

September 24, 2015: Cheng Xiang Returns to Lanzhou

​It's time for Cheng Xiang to return home to Lanzhou! We visited him in the Beijing hospital this afternoon to say goodbye after his check-up. His father was very happy to receive the financial support and help from Little Red Scarf. He expressed his gratitude through the video and thank you letter above. 

​Thank you for your support!

September 17, 2015: Cheng Xiang Discharged from the Hospital

Two days ago Cheng Xiang was suffering from indigestion and a fever, so he spent a day in a small intensive care unit where he could be observed more closely. After Cheng Xiang was treated, his fever abated. 

Yesterday the doctor told us that Cheng Xiang could be discharged from the hospital today. This morning, Cheng Xiang’s father and I (Beijing staff) went through the discharge procedures.  We're all very happy for Cheng Xiang!

Because Cheng Xiang's case was complicated and he had a high fever and symptoms after the surgery, the doctor recommended that after Cheng Xiang is discharged from the hospital he should stay in Beijing for a bit, and then have another check-up, just to make sure there aren’t any problems before returning to Gansu. 

As of today, Cheng Xiang’s medical bills in Beijing have totaled at least 102,000 RMB (over $16,000 USD). While Cheng Xiang was in the hospital his father found two more organizations to help him provide 40,000 yuan. We’ve found Cheng Xiang’s father to be very smart and capable. We believe that after Cheng Xiang is healthy, with the father’s hard work, the family should be able to clear the debt relatively quickly. ​

While Cheng Xiang and his parents stay in Beijing, they are renting a small room, which is mostly just created by partitions. They switched to a slightly larger room today.

Today was sunny, so in the afternoon I went back to find a stroller. That way Cheng Xiang could enjoy the sunshine and his parents could take him out for a walk.

September 11, 2015: Cheng Xiang Recovering Well

This afternoon we visited Cheng Xiang in the hospital. He’s in the general ward now and was transferred from bed 20 to bed 16. He’s in good condition. Here are some photos from today. Cheng Xiang is now 1 year and 7 months old.

So far as of today, Cheng Xiang’s medical costs in Beijing have totaled about 90,000 RMB (over $14,000 USD). Two organizations in Beijing have assisted with 40,000 RMB of that total. Cheng Xiang is expected to be discharged next week to return to Lanzhou.

September 10, 2015: Letter from Cheng Xiang's Donor Uncle PC

Hello to little brother Cheng Xiang’s family,

I am Uncle Chen in America, and I found out through Transparent Fish Fund that Cheng Xiang needed surgery. To see children this young endure the hardships of sickness pains my heart. I have two daughters who fell sick when they were young, and our parents were the ones who worried the most. So everything your family is experiencing, I can personally identify with. I decided to donate to Cheng Xiang’s second surgery to help relieve your heavy financial burden.

When my daughters were young and sick, I often prayed to God in heaven and they started to recover. I also pray for Cheng Xiang every day, asking God the Father and Jesus to bless him and and help him recover soon.

Little Cheng Xiang, be brave. Even though Uncle PC can’t personally visit, I can tell from Uncle Zhou’s photos that after surgery you are gradually getting better. Rest well, and listen to your parents and the doctors. Take care of yourself. In the future you will be able to go to school and be a good student, and you will be happy and make good progress.

Well wishes,
Uncle PC

September 9, 2015: Transferred to Smaller ICU

This morning we went to the hospital to visit Cheng Xiang and see how he’s doing. He has already been transferred from the ICU to the smaller ICU ward. When we entered the ward, Cheng Xiang had already awakened. He’s doing ok for now after his second surgery. He was able to be removed from the respirator.

September 7, 2015: Cheng Xiang's Second Surgery

Cheng Xiang's second surgery lasted 7 hours and went smoothly! The doctors in Beijing also helped him apply for two other NGO's subsidies, which provided an additional 40,000 RMB (about $6,300 USD) of support.

September 1, 2015: Preparing for the Second Surgery

Cheng Xiang has already been in the Beijing hospital for 10 days. Our Beijing staff has been tracking his daily progress. Yesterday we found out that after Cheng Xiang finished angiography (X-ray examination for blood vessels), he stayed in the ICU for 4 days to be observed. Now he has been transferred to the general ward. 

The little guy is in good condition. After an examination, the doctor has confirmed that Cheng Xiang can handle a 2nd surgery and won’t need a third one. However, Cheng Xiang’s blood vessels are too narrow, so during the 2nd surgery, they will have to implant artificial blood vessels. Currently the hospital has artificial blood vessels that are 10–12 mm, but Cheng Xiang needs 14-16 mm, so the hospital needs to apply for them. The surgery is tentatively scheduled for September 7th or 8th. 

August 22, 2015: Cheng Xiang in Beijing

Cheng Xiang traveled to China's capital to prepare for his second surgery. Due to his special condition, he needed the extra care from the doctors in the Beijing hospital.

Our Beijing staff greeted him with gifts of fruit and toys. As the patient's advocate, they help the rural families from Gansu navigate the complex hospital systems in the large metropolis.

July 31, 2015: Support Raised for Surgery

Thanks to our generous donors, the $4800 USD needed to subsidize Cheng Xiang's second surgery was provided! We are so grateful for your life-changing support.

Summer 2015: Recovering from the First Surgery, Preparing for the Second Surgery

Now Cheng Xiang smiles every day when he sees familiar people come visit. All we need to do is play with him and he laughs! His laughter is like sunshine that melts the heart, and his mother’s heart has already been softened. Every sound and movement Cheng Xiang makes influences his parents’ thoughts and feelings. Each time we visit now, Cheng Xiang’s mother’s eyes are full of laughter. 

Cheng Xiang laughs all day

Dr. Liu told Cheng Xiang’s parents that based on their child’s situation, he estimated that they would need three months of treatment. After one month they could give him a second surgery. Cheng Xiang’s father worried that the multiple operations would be too hard on the child, and we also had similar concerns. But Dr. Liu told him not to worry, that Cheng Xiang’s post-surgical indicators were all normal and that he was recovering well. He emphasized that we should take advantage of this timing because the child’s health was so good, and that they would not recommend it if it were too risky. Since Cheng Xiang has overcome this first battle, his father trusts Dr. Liu. He knows Cheng Xiang still has two more battles to win before a complete victory. However, the costs of the second and third surgeries weigh heavily on his heart. 

June 5, 2015: Cheng Xiang Released from Hospital

On June 5th, after the post-operative check-up, all of Cheng Xiang’s vital signs were completely normal. Moreover, his pulmonary artery was developing well, so the hospital drew up the discharge paperwork to let Cheng Xiang recuperate at home for a while before the 2nd surgery.

Cheng Xiang had clubbed, purple fingers before surgery.

Cheng Xiang’s little hand after the surgery. The color is now completely normal.

June 1, 2015: Children's Day

On Children’s Day we prepared gifts and met in the hospital. Returning to the general ward, we saw that Cheng Xiang had gotten much better in just one day. His father said that the improvement began the 2nd day after leaving the ICU and that the child was getting better with each passing day. There was no comparison with how things were before the surgery. Beforehand they had trouble getting Cheng Xiang to eat. Now he was reaching for food himself, although they still wanted to obey the doctor and limit Cheng Xiang to frequent but small meals. His parents knew that the post-surgery recovery would not happen all at once, but would instead be a gradual process.

May 28, 2015: Transferred out of the ICU

After 12 days in the ICU, Cheng Xiang was finally transferred to a general ward, and my colleagues rushed over to visit him. As soon as Cheng Xiang was out of the ICU, his color began to change. Although his cheeks and lips were still not pink, they were no longer black. Because of the sedatives he was on, he still wasn't feeling well, and he had no expressions, but he simply needed time to recover. 

As soon as Cheng Xiang was out of the ICU, his color began to change.

From the time Cheng Xiang left the ICU, his mother never left his bedside. She would look at his little hands, stroke his face and feet, communicating her thoughts and concerns through her movements. Although Cheng Xiang was right next to her, it still could not ease the guilt she felt for the 12 days that she could not be with him.  

May 16–27, 2015: Recovery in the ICU

Cheng Xiang stayed in the ICU for 12 days, much longer than the doctor’s initial estimate of 4 to 5 days. During the procedure, the surgeon had discovered upon opening the chest cavity that Cheng Xiang's case was more complicated than the original ultrasound had suggested. He also confirmed that Cheng Xiang would require 3 surgeries to completely fix his condition. As Cheng Xiang clung on in the ICU, his parents waited in agony.

The 8th day after surgery, the nurse told Cheng Xiang’s family that they would be allowed to send him food. He was successfully able to breathe after the ventilator was removed, which was a significant post-op milestone. 

May 15, 2015: Cheng Xiang Undergoes the First Surgery

Cheng Xiang’s surgery on May 15th lasted from 8:30 in the morning until 1:30 in the afternoon—a full 5 hours. Everything went smoothly. 

May 14, 2015: Scheduling Cheng Xiang's First Surgery

On the afternoon of May 14, 2015, we received a call from Cheng Xiang’s father to say that the surgery had been scheduled for the following day. He had just come from the doctor’s office and signed the papers. Although he tried to sound calm and controlled, I could hear the anxiety in his voice. When we walked into Cheng Xiang's hospital room, suddenly Cheng Xiang laughed. The rare sound of his laughter relieved some of my stress and brought a genuine smile to his mother’s face. I even had a camera on hand to capture this uncommon moment. My heart melted, my anxieties disappeared, and I was finally able to relax and talk to his parents.

May 2015: Meeting Cheng Xiang and Surgery Preparation

When I first saw the color of Cheng Xiang’s lips, I was shocked. Most children with severe congenital heart disease have purple lips. But Cheng Xiang's case was even more severe. Instead of being purple, his lips were completely black. He had black lips, black cheeks, and black hands. In my many years of working with Little Red Scarf, I had never seen a case like Cheng Xiang’s. I couldn’t tell how the child was able to breathe, and I knew that he must be very uncomfortable. When I first saw him he didn't cry, but he continuously moaned. 

Before surgery Cheng Xiang's features were completely black.

Cheng Xiang’s application to Little Red Scarf was approved the day we received it. His father immediately went to prepare for his admission to the hospital, and the nurses got the bed ready for his arrival. As soon as he was admitted they checked his oxygen levels. Unsurprisingly, Cheng Xiang was in desperate need of oxygen, which explained why his extremities were so black.

Because of the distress caused by his congenital heart disease, eighteen-month old Cheng Xiang could not sit still. He had no way to express his discomfort except to cry. During the first three days of his hospitalization I never saw him smile or rest peacefully; all he could do was whimper. This period of time was also when I first saw his mother express her emotions. As she silently watched, fixated on her child, it was as if she had blocked out everything around her except for him. Nothing else mattered. All her eyes saw—and all her heart felt—was for her precious child.

Cheng Xiang suffered from pulmonary atresia with a septal defect. Before the surgery, the doctor showed Cheng Xiang’s father an image of his son’s chest and pointed out that the left lung was black, but the right lung was white because it was healthy. Blood was not flowing through to Cheng Xiang’s left lung because of his heart defect, so the goal of the surgery would be to enable blood to get through and help develop his second lung. Although Cheng Xiang’s father was nervous, he was also determined to see the surgery through. It was the only chance his son had to survive.

Original Article Written by Yunyun Jie, translated by Shau-Ru Chao, edited by Yanyan Zhang