This is a happy small family, and both husband and wife have a good job and income. After a child was born, he contracted a rare disease. In just two years, he spent 900,000 yuan in medical expenses, dragging a well-off family into the abyss of poverty.
The picture shows the protagonist Xiang Qian and her son
. Hello, my name is Xiang Qian and I live in Z9z Mashi Town, Tongjiang County, Sichuan Province. My husband and I were introduced to each other in March 2017. My husband has been doing sourcing at a small foreign trade company in Shanghai, and I worked as a front desk at a training institution in Chengdu. We got married at the end of 2017. I found out that I was pregnant in March 2018. In May, due to a strong reaction during pregnancy and no one to take care of in Chengdu, I quit my job and went to Shanghai to have a baby.
The picture shows Xiangqian
at 34 weeks in the third trimester, my platelets began to decline, and the platelets dropped to 59 at 36 weeks. The doctor requested hospitalization for observation, and the number of platelets dropped to 51 on the third day of hospitalization. The doctor arranged a cesarean section urgently. After the baby was born, my platelets returned to normal. The baby was delivered by cesarean section at 3pm on November 1, and was sent to the neonatology department for observation. During this period, the child was covered with impetigo. Five days later, I was discharged from the hospital. The impetigo on the child has not disappeared. The doctor asked us to go home and wipe it with iodophor and Baidubang . The impetigo was completely cured after half a month.
The picture shows Xiang Qian’s child, Xiang Yiheng
, when the child was born, he could not get the vaccine because of the infection. After the full moon, we took him to the community hospital for vaccination, but because the child's ductus arteriosus was not closed, the vaccine was not available. We took the baby to the hospital where it was born (the East Hospital of Shanghai Sixth People's Hospital) for an examination, and a blood item was checked at the same time. The blood item shows that the child's white blood cells are more than 20, and the infection index (CRP) is 80. The doctor could not see why, so we took the child to , Children's Hospital of Fudan University for further examination. The result of the examination showed that the child's right lymph node was enlarged, and he was given antibiotics in the hospital for two consecutive days.
The picture shows Xiang Qian and her child
are planning to return to their hometown at the end of the year. I returned to Chengdu on December 8th as planned. On December 9th and 10th, I ran to the hospital in Chengdu with my baby. In the Jinjiang District Maternal and Child Health Hospital, the doctor said that the child’s disease was surgery, and they did not have surgery there, so he asked me to go to Huaxi Maternal and Child. The Huaxi Maternal and Child Emergency Department also said that they did not have surgery. We went to Chengdu Women and Children's Central Hospital again. After two days of running, there was finally a hospital that could treat the child.
The picture shows Xiang Qian’s child
. Because there was no bed that day, the child had a day's fluid infusion in the emergency department. At 5 o'clock the next day, I brought the child to the hospital to line up. I was finally admitted to the hospital at about 11 o'clock. By this time, the lymph node of the child was already obvious and looked very big. After the child was hospitalized, he developed a fever. After more than a week of examination, he was diagnosed with sepsis . After half a month of treatment, the sepsis was controlled, and the lymph nodes on the child's face had begun to suppurate, and he was transferred to surgery. The child was only 45 days old at this time. Because the lymph nodes are on the face, the doctor did not dare to give him anesthetics, and directly cut his skin with a knife to clean up the pus and carrion. I can't forget his crying, that kind of heart-piercing lungs, it really makes me heartache. Can't be alone.
On January 10, 2019, the child returned to his hometown after being treated for sepsis in Chengdu for nearly a month. But only 3 days later, he suddenly had a high fever and was taken to Tongjiang County People's Hospital overnight. The doctor looked at the child's condition and simply prescribed anti-fever medicine. There was no ward at the time, and my child and I spent the night in the corridor of the hospital until dawn. All night, I was shivering with the cold, wrapped the child in my arms, and my heart was filled with sadness and despair.
The picture shows Xiangqian
County Hospital can not do further examination, and there is no high-level antibiotics to treat the child's infection. Then the doctor advised us to transfer to a higher-level hospital for treatment. After inquiring from various parties, I learned that the Children's Hospital of Chongqing Medical University is the best children's hospital in the entire southwestern area, so I hurried to Chongqing. After the examination, the child was first diagnosed with sepsis and severe pneumonia. After a week of treatment, the child's condition has not improved at all. After further examination, the child was diagnosed with fungal pneumonia, rotavirus infection, etc.
figureFor Xiang Qian’s son, Xiang Yiheng
, the doctor began to suspect that the child’s immune system had problems and asked us to do a respiratory outbreak test. I did not hesitate and agreed immediately. Eventually the child was diagnosed with a rare disease: chronic granulomatous immunodeficiency. According to the doctor, there is only a one-in-200,000 chance of suffering from this disease, which is characterized by long-term complications with various infections. If you don't take treatment, you can only survive for 5 to 7 years. The only cure in China is bone marrow transplantation.
After listening to the doctor’s introduction, I was still struck by a thunderbolt. Since that day, our family has been labeled as a rare disease. After the child was diagnosed, we rushed to the hospital frequently to treat infection complications while waiting for news from the bone marrow donor. Children need to take a variety of drugs every day to treat and prevent infections. Among them, weifan voriconazole is an imported medicine. A box of only 10 pills costs nearly 4000 yuan, and 2 boxes are taken a month. The economic pressure has risen sharply, making it difficult for our newly formed small family to support, but the frequent infections that follow make it worse.
The picture shows Xiang Qian and her child
in March 2019, the first time the child was hospitalized for infection after being diagnosed. He continued to have diarrhea and low-grade fever, and his condition worsened after two days of medication. The father of the child has gone to work in Shanghai, and I am the only one at home. I once again ran to the hospital with my child alone. I ran to several hospitals but couldn't be hospitalized. Finally, I found Chengdu West China Second Hospital. After
was admitted to the hospital, there was a series of examinations, and the results soon came out: fungal pneumonia was infected again, and the lymph node wound on the right ear side was ruptured again. This means that the child will receive no anaesthetic, only tweezers and tampon, repeatedly inserted from the incision to remove the piercing tingling process. After a month of treatment, the child's condition was under control.
The picture shows Xiang Qian and the child in the ward
witnessing the child's blood draw, indwelling needle, and incision drainage. My tears have already drained and my heart is completely shattered. I know that I can't bear these pains for him, but I can take good care of him to reduce the number of infections. I will never again choke him because of the syringe feeding and reduce the dose of the medicine. I never dare to put him at home and go out to work. I took care of him carefully, not daring to take him to crowded places.
The picture shows that Xiang Qian is infusing her child with the nutrient solution
. It is necessary to go to Chongqing Hospital to see experts and do checkups every month. Every time I go to the train station, I carry a big bag and a child in my arms. People often ask me: "Why did you come out with your child? What about the child's father?" I can only say briefly. : "Take the child to see a doctor, and the child's father is working." Maybe they all understood it at once, and stopped asking anything.
Although I take care of me, I still can't prevent the infection from harming the child. In September 2019, there was a red spot on the child's thigh. At first, he thought it was a mosquito bite, so he disinfected it in time. But in just a few days, the red spot became a big swelling. I rushed to West China No. 2 Hospital, and found that an abscess had formed after a B-ultrasound examination, and he had to undergo incision drainage. Tears flowed from my eyes, I resented that I didn't take good care of him, and I was even more afraid that without the drainage of anesthetic, my child would suffer the pain of gouging. The doctor told me that I need to be transferred to West China Hospital for surgery. Looking at such a young son, I cried all the way and took him away from West China Second Hospital, and then hurried to West China Hospital.
The picture shows Xiang Qian and his child
surgeon reconfirming that the abscess has formed and must be operated on immediately. The whole procedure was exactly the same as I expected, the difference is that this time the incision is bigger and deeper. The incision up to 3cm needs to be opened and inserted into a 30cm tampon. With tears in my eyes, I cooperated with the doctor and pressed the child's leg hard to complete the dressing change once a day. I always think that every time bad luck ends, there will be no next time, but fate seems to be an exception to us.
In October 2019, the child's leg drainage was not cured before he was infected again and continued to receive treatment at West China Second Hospital. The child has been suffering from fungal pneumonia since he was diagnosed with a rare disease. This time was no exception, it was another lung infection. Doctors are already familiar with us. Low-level antibiotics such as penicillin and erythromycin and are no longer considered, and high-level antibiotics such as meropenem and vancomycin are used instead. It was another month before the child's leg incision healed, and the fungal pneumonia seemed to be under control. but notKnow when it will launch a crazy attack again.
The picture shows Xiangqian mother and son
in December 2019, the most serious infection, the child repeatedly low-grade fever, shortness of breath, always crying and restless. I dared not delay, and hurried to West China Second Hospital. The doctor seems to have no good countermeasures and can only watch to reduce the fever. This time I did not follow the doctor's arrangements. I was very worried about the child. I felt that this time was not as simple as infection. After rushing home to pack the milk powder, diapers and other necessities, I set foot on the train to Chongqing again.
Chengdu is not far from Chongqing, but the two-hour drive makes me feel extremely long. The condition of the child in my arms is getting worse and worse. I can't wait to send the child to the doctor right away. After I came to the hospital, I had an examination first, and the results came out soon. The child had a large amount of pericardial effusion. The doctor asked for immediate surgery, this time I can only wait outside the operating room. Three hours later, the child was pushed out with a drainage tube inserted.
The picture shows Xiang Qian and her child
during the gap between the child's anesthesia, and the doctor talked to me. Tell me that the child has a very serious infection, and I suggest that we do a bone marrow transplant as soon as possible, otherwise the risk of infection in the future will increase. After listening to the doctor, I cried and called my husband. At that time, I had collapsed. I kept asking my husband what to do? I kept repeating, I can't bear the child, I want to save him! Husband choked on the phone and was speechless. It took a long time to say, let's go to Beijing Naval General Hospital.
On December 20, the child was discharged from the hospital in Chongqing and did not go home. I took the child straight to Beijing. My husband also came to Beijing from Shanghai. For more than a year, our family of three set off from two cities and reunited briefly in Beijing. After arriving at the Beijing Naval General Hospital, we saw experts. Experts told me that my husband can be a bone marrow donor. Husband and children are half-matched, but currently we need to wait for the warehouse to be arranged. Our family of three had to separate again. My husband continued to go to work to earn medical expenses. I took the children home and waited.
The picture shows a group photo of a family of three in Xiang Qian's mobile phone.
In May 2020, before the news of coming to the Beijing hospital, the child's infection broke out again. I continued to bring my child to Chongqing for hospitalization. In June 2020, there was still no news from Beijing Hospital, but the infection of the child became more and more frequent. I could only take him to Chongqing repeatedly for treatment. Until the beginning of July, good news finally came from Beijing, informing us that we were ready to do the transplant.
On July 20, 2020, we came to Beijing. One week after admission to the hospital, but because the child's weight was not up to standard, he needed to raise him for a while. For this reason, we can only stay in Beijing temporarily and wait for the notification of transplantation. In August 2020, the child was hospitalized again due to infection in Beijing. After the doctor has seen the child's condition, he recommends that he stay in the hospital for treatment until he enters the transplant room. On September 16, 2020, the child can finally enter the warehouse for transplantation.
The picture shows Xiangqian
during the whole transplant period. The child had a strong response to chemotherapy, and his body was covered with various infusion tubes. The liquid was continuously infused for 24 hours. Take a variety of drugs at a fixed time every day. On October 19, 2020, the child was transferred to the general ward. Although he was able to get out of the warehouse, he was in very bad condition, with edema all over his body, hemoglobin in his blood index was very low, and his platelets fell to single digits.
On October 20, the child's condition got worse, and the doctor asked me to talk to my husband. Our child was diagnosed with the most serious complication after transplantation: hepatic venule occlusive disease. This complication is very critical. The doctor said that only the imported special medicine "defibrillin" can be controlled. This complication develops rapidly and must be administered on the same day. After the talk, let us hurry up and buy this medicine, and at the same time we gave the child a critical illness notice.
The picture shows Xiang Qian giving her child a nutrient solution
. This is the most nervous and fearful moment in my history. With a trembling voice, I begged the doctor to save my child. I wanted to cry but couldn't cry, my husband looked very serious. He didn't speak, just kept calling. We asked for help from various patient groups, and the patients told me the way to buy this medicine. Soon, a patient contacted me and said that they were sold in Hong Kong pharmacies. After I hurriedly contacted the pharmacy, I learned that a box of medicine is 22,000 yuan. Without a formal invoice, it can only be purchased in cash. The doctor said that a course of treatment for this disease is 21 days, 4 boxes are obtained, and the cost of medicine is 100,000 yuan.
Since the child entered the warehouse for transplantation, all of our self-funded expenses have been spentMoney. How can you get the high cost of medicine now? The doctor kept urging questions about medication, and made it clear that now is the time to buy life, we have to ask relatives and friends to borrow money again. After treatment with specific drugs, hepatic venous occlusion has improved and ascites has been absorbed. But the long road to treatment continues.
The picture shows Xiang Qian and her child
's current treatment is mainly anti-rejection and anti-infection. Daily intravenous injection of imported caspofungin and domestic voriconazole antifungal drugs. In November, the child was infected with cytomegalovirus. It has been treated for more than a month and has not recovered. I have been treated with valganciclovir for 10 days and have been ineffective, and now I have changed to cidofovir treatment, especially isopropyl balls 3 a week.
Currently, medical expenses have dropped from 15,000 yuan the previous day to about 4,000 yuan. We have spent more than 900,000 yuan since the child fell ill. Most of the upfront expenses were raised by borrowing debts and using credit cards. The follow-up inspections and infection prevention will cost about 300,000 yuan. We have already seen hope in terms of treatment, but the huge economic pressure is like a heavy mountain, weighing on us and it is already difficult to support.
If you want to help this child, you can long press the identification QR code to view the project details and make a donation. If you can’t recognize it, you can save the QR code to your phone album, open it and scan it, and select the QR code from the album to scan and recognize. The project was initiated by the China Social Welfare Foundation's 919 Critical Illness Relief Project, fundraising was initiated on the Internet fundraising information platform "Water Drop Charity" designated by the Ministry of Civil Affairs, and responsible for project review, execution and information feedback. The final interpretation right of this project belongs to China Social Welfare Foundation. Supervision telephone: 4009-010-919. The
"Photosensitive Project" bridges charity photographers, charitable organizations, and fundraising platforms, publishing pictures and stories about families in distress, and helping to raise funds. The plan is a picture public welfare project jointly initiated by today headlines, China Photographers Association and China Children’s Charity Relief Foundation, China Population Welfare Foundation, China Social Welfare Foundation and other charitable organizations with public fundraising qualifications. If you have difficulty, you can privately write the official headline number of the "Photosensitive Project".
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