Boys and girls are lined up in two rows and screened separately. They lay down on the examination bed in turn and took the initiative to lift their clothes from the bottom up, revealing the heart area. A male doctor in a white coat, after applying couplant to an ultrasound probe, moves the probe around the child's chest while staring solemnly at the image on the display.
The children couldn't help but exchange heads and ears in the queue, and the naughty ones played small actions, and from time to time there were a few laughs, abrupt and loud.
In the laughter, the children seemed to know that what was about to be announced was the belated fate of the verdict.
The male doctor sat in a chair and appeared unusually silent—he had already found four children with congenital heart disease in a row in a class.
Birth, accompanied by the crying of babies and the tears of loved ones, the brilliance of life gathers hope at this moment, but birth defects are the lingering shadows behind that hope, and they are regarded as "born patients who were sentenced to prison sentences just after birth".
Congenital heart disease (hereinafter referred to as "congenital heart disease") is the most common birth defect and the leading cause of child death among birth defects. Timely diagnosis is essential for early treatment and reduced complications. Meta-analyses show that the prevalence of congenital heart disease is about 8 per thousand in newborn infants born alive, and in untreated congenital heart disease in school-age children is 3.8 per thousand.
Such data is inconsistent with what Zhao Quming saw with his own eyes in Luchun County, Honghe Prefecture, Yunnan Province.
"It's shocking that a class of more than forty people screened out four cases in a row." Zhao Quming, a doctor from the Children's Hospital Affiliated to Fudan University in Shanghai, said, "First, the number of shocks is so large, and second, the shock is that there are already very obvious and serious symptoms, why didn't you see a doctor in time?"
After the examination, the child sat up and walked quickly out of the classroom that served as a temporary examination room. The sound of running footsteps and playful frolicking came from the corridors, as if these few minutes were just "interludes" of their recesses and would not have any impact on their lives.
But with the release of the test results, the doom that has long been identified is no longer hidden, and the health of some children is hanging in the air.
Suspicious
From kunming, the provincial capital, to this border county, it takes 6 to 7 hours by car. All the way to the south, the wide and clean road gradually narrowed, and the people in the car changed from overlooking the mountains to being in it. Deep into the Red River State, the highway is built along the mountain, with green mountains on one side and cliffs hanging on the other.
Despite the smooth pavement, warning signs often appear at corners – foggy ahead, rockfall, subsidence, sharp bends, landslides, and "please slow down" in front of you.
The great rivers run through the border, the mountains are connected by bridges, and a group of doctors from Shanghai came to this land - in June 2019, the Children's Hospital of Fudan University signed an agreement with Honghe Prefecture to start health poverty alleviation in Luchun County, and Zhao Quming was the second batch of yunnan aid team members who came here.
Adjacent to the Socialist Republic of Vietnam, Luchun County has a total of nine townships, ethnic minorities account for 98.8% of the population, Hani ethnic groups account for 87.7%, was once one of the key counties of the national poverty alleviation and development work, and one of the 27 deeply impoverished counties in Yunnan Province.
After the border inspection, it takes less than 15 minutes to drive to the Luchun County People's Hospital, which is in Daxing Town, and there is only one road in the town. Walking on the streets of the county seat, from the adjacent buildings, you can see the peak of the mountain opposite.
For Zhao Quming, going to Luchun to help is an opportunity, an opportunity to prove his guess with facts. The 2012 National Report on the Prevention and Treatment of Birth Defects shows that the incidence of congenital heart disease in rural areas is lower than that in urban areas.
Zhao Quming is skeptical of this authoritative data, he believes that the low incidence of rural areas is likely to be due to the limited level of monitoring and detection methods in rural areas, and the low level of active screening and diagnosis.
Source: 2012 National Birth Defect Prevention and Control Report
Since 2018, the National Health Commission has included critical congenital heart disease screening into the routine screening program for newborns, but Luchun County has not yet started. Zhao Quming plans to drive the screening of newborn congenital heart disease in Luchun County. After communication, the screening work was carried out in the obstetrics department of Luchun County People's Hospital, and during the support period, every newborn received free congenital heart disease screening.
At the same time as the screening was initiated, Zhao Quming also made an appearance in the pediatric department. The pediatric department is on the sixth floor of the inpatient department, and the Chinese slogan in the stairwell is marked with Yi and Hani languages. Walking in the corridors, most of the ears are Hani or dialects, and doctors from out of town often need local nurse interpreters to communicate with patients.
In ethnic minority areas, ethnic medicine tends to run parallel to modern medicine. In the process of diagnosis and treatment, Zhao Quming found that many local children, even adults, had circular scars on their stomachs that looked like they had been "branded".
Such scars are formed by burning red bamboo on the skin, which is called "pei tuo" in Hani, "pei" means intestines, and "tuo" means to print. In the local understanding, "pei tuo" has the effect of preventing gastrointestinal diseases and "exorcising evil spirits", which is mostly done between the ages of 3 and 6.
Picture note: Scars on local children. Courtesy of respondents
Different ideas hit Zhao, and local doctors reminded him that he could not easily question the local people's treatment methods in person, otherwise he would be considered disrespectful of local traditions.
"Some patients are hospitalized and discharged from the hospital to see the yellow calendar to pick the date, the day is not right, they are not willing to cooperate." 」 Zhang Guowen, director of the Pediatric Department of Luchun County People's Hospital, said.
Zhang Guowen, a native of Hunan, came to the hospital in 2010 and has been in Luchun for 12 years. He deeply understands the differences in local and external concepts: "The degree of cooperation between patients and their families is not high, mainly limited by the economic level, and there are some conceptual problems." Due to the limited medical conditions in the local area, in the face of severe illness and difficulties, doctors will recommend that family members be transferred to the hospital for treatment, but most family members will take the patient back home.
The diagnosis and treatment of congenital heart disease requires a certain amount of experience. Zhao Quming learned that from the beginning of 2013 to the 2019 he came, the pediatric department of Luchun County People's Hospital has hardly treated cases of congenital heart disease.
Zhao Quming was suspicious of this, speculating that there were no cases because of the limited level of local diagnosis. Soon, the speculation was confirmed.
It was a child diagnosed with pneumonia, and the first time Zhao Quiming saw him, he found that he had a wide eye distance, an upward oblique lateral side of his eyes, a low nose root, a small external ear, and a short stature, which was a congenitally stupid face, that is, suffering from trisomy 21 syndrome. In contrast, 40% of children with trisomy 21 have cardiovascular malformations, and ventricular septal defects are the most common.
During the auscultation of the child, Zhao Quming heard a pronounced heart murmur, and then checked the corresponding cardiac ultrasound report, which showed that there was no problem with the heart. Zhao Quming was not at ease, and went to the functional department to check the corresponding image, and the result was as he expected, there was a significant ventricular septal defect.
"At first glance, it's a very obvious image of the problem, and the local level of diagnosis is really limited." He said.
Looking at the five- or six-year-old child in front of him, Zhao Quming realized that it was not enough to screen newborns for congenital heart disease.
Due to the insufficient level of diagnosis in underdeveloped areas, there may be a large number of missed diagnoses in infancy and early childhood, so there will be many undetected children with congenital heart disease in school-age children. This idea of his was supported by Huang Guoying, president of the Children's Hospital affiliated to Fudan University.
Zhao Quming decided to expand the scope of screening and carry out screening for congenital heart disease in school-age children.
Shocked, deplored, sense of mission
How are school-age children screened for congenital heart disease? The current method is mostly to perform a physical examination first, and then to confirm the diagnosis by cardiac ultrasound for abnormal objects. This model can find a subset of children, but due to the limitations of the diagnostic experience of different doctors, it is inevitable to miss many cases and underestimate the true prevalence of congenital heart disease. Therefore, there is a lack of real epidemiological data on congenital heart disease in school-age children at home and abroad.
Previously, Luchun County has not carried out this model of screening. In the paper published in 2020, "Investigation on the Prevalence of Congenital Heart Disease in School Children Aged 4-14 in Luchun County, Yunnan Province and Feasibility Analysis of the Application of Remote Screening System in Congenital Heart Disease Screening", the researchers screened children in 123 kindergartens and primary schools in 9 townships in Luchun County, Honghe Prefecture, on March 26-30 and April 16-19, 2018. Among the 24932 children who were screened, 1122 suspicious children were found to be suspicious after physical examination, and the screening was mainly based on cardiac auscultation, and 52 were finally confirmed by cardiac ultrasound, with a prevalence of 2.086 ‰.
Different from before, Zhao Quming conducted large-scale echocardiographic screening and diagnosis and treatment of the whole population this time, and planned to directly use cardiac ultrasound for screening to avoid missed diagnosis caused by artificial initial screening.
Zhao Quming first found Zhang Yaohua, a poverty alleviation cadre stationed in Luchun County, Changning District, Shanghai, and director of the Luchun County Poverty Alleviation Office (now the Rural Revitalization Bureau). Zhang Yaohua immediately communicated with the Luchun County Health and Health Bureau and the Education and Sports Bureau and received a positive answer.
Zhao Quming returned to Shanghai, and through the coordination of Huang Guoying, president of the Children's Hospital affiliated to Fudan University, he seconded a portable echocardiograph to carry the instrument "human flesh" back to the green spring.
In Zhang Guowen's impression, Zhao Quiming was seriously motion sick and was unwilling to participate as long as it was an activity out of the county. In the six months of Green Spring, Zhao Quiming has only traveled to and from Shanghai twice, once to go home for the New Year, and once to borrow instruments.
Affected by the epidemic, the school has postponed the opening of the school, and it seems that the six-month support time is about to end. On May 8, 2020, the Luchun County Education and Sports Bureau issued a red-headed document, and the screening work was officially launched. Before the screening, the school reported the list of students, and Zhao Quming and Zhang Guowen calculated the screening time according to the list at the rate of screening a student per minute and fed back to the school.
Screening was first carried out in the county seat, and Zhao Quming plans to screen 8,000 to 10,000 school-age children to obtain data and conduct relevant research. Zhang Guowen adjusted the shift to night shift and accompanied Zhao Quming to carry out screening during the day.
At the scene, Zhao Quming was responsible for screening, and Zhang Guowen maintained order at the scene and recorded the diagnosis and severity of children with cardiac abnormalities. According to different situations, different suggestions are written in the "Recommendation Column", which are arranged in order of urgency or decreasing severity as "scheduling surgery as soon as possible", "elective surgery", "hospitalization assessment", "medical evaluation", "follow-up every 0.5-1 year", and "annual review". For special cases, there is also a note that "re-operation is required".
The number of children screened for congenital heart disease was unexpected, and Zhao Quming gradually realized the seriousness of the problem - up to 4-5 cases of congenital heart disease could be found in a class, and even children with short stature, purple lips, and very obvious symptoms had never been diagnosed before.
"I can't move when I see this kid in physical education class, and I think it's not a good class." The teacher said.
This is not an isolated case. During the screening, Zhao Quming found several children who had developed severe symptoms such as pulmonary hypertension and heart failure and lost the opportunity to operate, and they had not received intervention treatment.
Zhao Quming and his party went to the school to carry out screening
In the face of the grim facts, Zhao Quiming's initial shock gradually faded, replaced by regret and regret that weighed heavily on his heart.
After screening different schools, Zhao Quming and Zhang Guowen had a preliminary judgment: the incidence is related to the economic level.
"The same is the county's middle school, the source of students from the township middle school, the incidence is significantly higher than the student source from the county middle school." Zhang Guowen said that during the screening process, he could feel it directly.
There are 13,215 children in and around the county seat of Daxing Town, which has reached the number of screenings that Zhao Quming initially expected. At the end of May, Zhao Quming was supposed to leave for Shanghai with the second group of team members, but he applied to postpone the return trip and stay for another month. Zhao Quming did think at the beginning that he could collect enough samples, but after really doing the screening, after contacting the children, I wanted to try my best to do more."
The face-to-face experience with several children is very different from the feeling of facing a list. Zhao Quiming asked their names one by one, and in the only minute he had established a kind of wordless understanding. He was once looked at "pitifully" by his first diagnosed child - "Can this disease be cured?"
At first, Zhao Quming's motivation focused on obtaining enough sample size to carry out research, and when he found that the situation was grim, his motivation began to change: he decided to go deep into the township and continue to expand the screening area to find more sick children.
The silent other half
The green spring rainy season is long, and from May to October every year, a white mist rises in the gentle drizzle, overflowing the field of vision. In the clouds, the mountains loom and drive on the mountain roads, like being in a fairyland. However, the ride experience is not "poetic" at all.
From the county seat to the township in the green spring, it takes an hour's drive to drive near and three hours to drive as far as away. And in the rainy season, the road conditions are changeable, and if you encounter rockfall or landslides, "two hours of road can drive for four hours." Zhang Guowen said. Zhao Quming is a "well-known" motion sickness, encountering winding and bumpy mountain roads, which can be described as the right weakness.
Screening to Ge Kui, Sanmeng and other townships slightly farther away, often have to stop once or twice during the journey, to Give Zhao Quiming a car to vomit. Sometimes the stomach was empty, and he could only spit out some transparent liquid and green bile.
For Zhao Quming, the most tiring thing is not to screen more than a thousand people in a row, but to carry out screening immediately after three hours of bumping on the mountain road. The schedule is tight and there is not much flexibility left.
In June 2020, the third batch of members of the Aid Dian team to help Luchun arrived, among which Chen Weicheng, a cardiothoracic surgeon at the Children's Hospital affiliated to Fudan University, joined the screening team for congenital heart disease. In order to ensure the accuracy and consistency of the screening results, all echocardiographic tests are still completed by Zhao Quming.
The month that Mr. Zhao postponed also expired quickly, and in a limited amount of time, the screening efforts eventually spread across five townships in Luchun County. The number of screenings is limited by the schedule of the day and the number of schools, and Zhao Quming screens at least 800-1000 people a day, with the highest number of records reaching 1500 people.
Pictured: Zhao Quming and his party went to the school to carry out screening
At the end of June 2020, when the return bell rang and Zhao Quming had to leave Luchun County, the screening for congenital heart disease in children finally stopped – a total of 21,861 children were screened, accounting for 99.2% of all school-age children in the region, with an average age of 11.9 years.
Through screening, a total of 285 children suffered from congenital heart disease, with a total prevalence of 13.0 ‰, which is nearly 4 times the results of the meta-analysis. Among them, 252 cases were diagnosed for the first time, and the proportion was as high as 11.5 ‰. Among the 252 children who were first diagnosed with congenital heart disease, 60.7% and 11.9% of the children with moderate and severe congenital heart disease were considered, respectively, that is, up to 72.6% of children with congenital heart disease had indications for treatment.
In addition, the large-scale screening of the whole population for congenital heart disease also led to another discovery - the prevalence of rheumatic heart disease, which was once considered rare among Chinese children, is extremely high in the local area, and it has another name, "poor disease".
Infection with group A B hemolytic streptococcus has a 3% chance of developing rheumatic fever, which can be avoided by anti-infective therapy after a diagnosis of laryngitis. In recent years, due to the improvement of medical standards and medical awareness, the incidence of rheumatic heart disease has decreased significantly.
However, the screening results showed that among the 21,861 children, 270 had rheumatic heart disease, with a prevalence of 12.3 ‰. In the case of Gokoy Elementary School, there were 68 cases of cardiac abnormalities in the school, of which 32 were heart diseases, and the rest were valvular abnormalities, i.e. the presence of possible or definitive rheumatic heart disease. In addition, there were 258 people with other heart diseases and abnormalities.
The screening results and suggestions for congenital heart disease were fed back to the parents by the school, and in July 2020, parents began to bring their children to the Luchun County People's Hospital for follow-up consultation.
"In the first two or three days, our clinic was full. Usually, there are only forty or fifty patients, and the number of patients received in those days has directly doubled." Zhang Guowen said that only later did he change his strategy, and different schools corresponded to different time periods.
After the follow-up diagnosis confirms the condition, the child and his family need to face tens of thousands or even hundreds of thousands of treatment costs. From Luchun to Shanghai is a cross-level referral, and the cost of treatment is not covered by medical insurance.
"I was also worried about what to do if so many children with heart disease were detected. It should be known that the average total hospitalization cost per person is more than 50,000 yuan, which is difficult for many local families to afford." Zhao Quming said.
However, in the early stage of preparation for the screening work, the Hospital of Pediatrics Affiliated to Fudan University conveniently decided to jointly 100% of the charity fund to be responsible for the cost and provide free assistance to the children with congenital heart disease found in the study and in need of treatment. "As a national children's medical center, Fudan Pediatric Hospital's medical poverty alleviation must not only complete tasks, but also do more and better, but also take the initiative to do more things." Huang Guoying, president of the Children's Hospital affiliated to Fudan University, said. Up to now, a total of 103 children have received free assistance from Luchun to the Children's Hospital Affiliated to Fudan University.
The story doesn't end there.
Although the children with congenital heart disease were found by the same doctor in the same screening, although they faced the same follow-up requirements and the same free surgery opportunities, they still ushered in their own different fates.
In the folder on Zhang Guowen's computer, there are several tables, one of which is called "Green Spring Congenital Heart Disease Screening Feedback - Those Who Need Surgery". The form records the school and class of the confirmed child, the date of birth, the diagnosis result and degree, whether to submit materials for free treatment, etc., with a total of 209 names.
That is, only about half of the children who need surgery receive free treatment.
Is free surgery real?
"Come to the school, it's not convenient to say it on the phone." When he received the call from the class teacher, Bai Yonghua was doing business in his shop.
Bai Yonghua's heart sank, and he quickly agreed to come down. There were still customers in his shop, but he couldn't take care of so much, and he was very panicked, so he immediately went out to go to school.
Maybe the child was injured at school, or had some conflict with his classmates, Bai Yonghua guessed.
Bai Yonghua's son, Bai Chengshun, was in the sixth grade of Daxing Primary School, and he rushed to the school and listened to the teacher's words, and his brain was confused. He had heard of congenital heart disease, but in his understanding, most of the "congenital" diseases were inherited, and there had never been such a case in his own family, so why was his son diagnosed? He knew that heart disease was not a minor problem.
Bai Yonghua only has this one son, and he is definitely going to be treated, and his first reaction is to take the child to the hospital in the state for examination. After learning from the teacher about the background of the screening and the free treatment in the follow-up, he took his son to the Luchun County People's Hospital for follow-up.
At the same time, he was also asking around what happened to those who had taken their children to surgery. "They all say that the child has grown taller after the operation, the appetite has improved, and the change is very big." Bai Yonghua said, "When they said it, I saw that my child was a little thin and picky about eating."
Bai Chengshun remembers that when he did cardiac ultrasound screening in the classroom, he was the longest screening time in the class. But from childhood to adulthood, he did not feel that he had any unusual symptoms, and he never thought that he would be diagnosed. In the table of screening results, Bai Chengshun suffered from a 9 mm atrial septal defect.
Bai Yonghua and Bai Chengshun were among the first families to travel from Luchun to Shanghai for treatment, and under the background of epidemic control, each child can only be accompanied by one family member. Since some parents are not proficient in Mandarin and even speak only Hani, each group of parents who go to the treatment needs to be accompanied by a parent who can speak both Mandarin and Hani.
Bai Yonghua worked in other places in his early years, but in 2011 he returned to Luchun to live, opened a tattoo design shop, was fluent in Mandarin, and often helped fellow translators in the process of "Shanghai Trip".
This time to Shanghai was Bai Chengshun's first time on a plane, he sat by the window, and he was a little scared when he took off. "When you fly up, you can see houses, mountains, fields, and when you are at the highest, you can only see clouds." He recalled.
After a one-day stay at the hotel, they were admitted to the hospital. The ward was divided according to the severity of the condition, and Bai Chengshun's condition was not serious, and he lived with the children who were undergoing minimally invasive surgery. On the day of the operation, Bai Chengshun was pushed to the door of the operating room in a wheelchair, moved to the bed and pushed in. Although the doctor said not to worry, Bai Yonghua's heart still held a breath.
"I originally had a pipe inserted here." Bai Chengshun pointed to his left wrist, "When I was taking the anesthetic, something like blood flowed from here to my throat." The index finger of his right hand ran from his left wrist all the way across his arm, shoulder, and then stopped at his throat. "Then I fell asleep and woke up with the surgery over."
The surgery lasted about two hours. When the son was pushed out, he was pale and surrounded by the cold air from the operating room. Bai Yonghua quickly stepped up to meet him, looking at it painfully, and asked with his mouth, "Do you feel okay?" Does it hurt? Cold or not?" Bai Chengshun replied in turn, "It doesn't hurt, it's a little."
After being discharged from the hospital, it was necessary to return to Luchun early the next morning, and the four families who were discharged from the hospital went to the Oriental Pearl Together in the afternoon. "Several of their children were bouncing around and very happy." Bai Yonghua smiled and recalled. It was Bai Chengshun's happiest day, he went up to the top floor of the Oriental Pearl, "the buildings are lit up, it is bustling, there are cars and roads." It's beautiful."
After returning from Shanghai, many parents came to Bai Yonghua for consultation, is it true that free surgery is true? How is the itinerary arranged? How was it after surgery? He always patiently replied, "Almost everyone I know has gone to surgery."
Bai Chengshun's own symptoms are not obvious, and the only change after the operation is that he has gained a little more weight than before, but he still looks thinner in the 14-year-old child. He himself felt that he had grown meat, and he was clamoring to lose weight, and Bai Yonghua glanced at him and saw that he was just making excuses for picky eaters, and laughed helplessly.
In the form of "Feedback on Screening for Green Spring Congenital Heart Disease - Those Requiring Surgery", there are a total of 23 children enrolled in Daxing Primary School. A year and a half has passed, and Bai Chengshun has entered junior high school. There are two junior high schools in the county, namely Luchun County No. 1 Middle School and No. 2 Middle School. The table shows that the number of people in need of surgery in the second middle school is 24, while the number of people in the first middle school is only 11. "The difference is that most of the students in the second middle school are admitted from the township." Zhang Guowen said.
What if you are diagnosed with a disease?
Knowing that free treatment was available after screening, Yang Pingan, a junior high school student, fell silent.
When she was screened two years ago, the Hani girl was in the first year of junior high school in the second middle school of the county, and it was not the first time she had been screened for congenital heart disease, she had been diagnosed in the fifth grade of primary school.
Dad took her to the hospital but didn't tell her the result. Yang Pingan did not know anything about her condition, and after that time, she did not go to the examination until the screening of the first grade.
In Yang Pingan's memory, she only underwent a physical examination in the first year of junior high school, and no one told her the results of the physical examination, nor did anyone tell her that she could be treated for free in the future. From the fifth grade to the first year of junior high school, the interval between the two examinations is two years, and the conclusions of the examinations may be different, but for her, the results are the same, and the silence is long-
And she just continued her usual life in constant silence.
Li Wen is Yang Ping'an's best friend, and she is one of the tallest girls in her class. Standing with Li Wen, although the two were both 14 years old, Yang Ping'an was shorter. The personalities of the two of them are moving and quiet, and Liwen likes to dance, and after class, she will go to the dance studio of the Children's Palace. Yang Ping'an, on the other hand, is more quiet, likes to draw, and communicates with unfamiliar people more rigidly.
Picture note: On the right is The sick Yang Ping'an, and on the left is Li Wen, who is the same age as her
The two met in the first year, when Yang Ping'an had hair that grew to the waist. "At that time, her hair was particularly long, and the nutrients were absorbed by the hair." Livin said.
Yang Pingan actually does not like to keep his hair too long, long hair is because his mother does not let cut, his mother always said to keep a little longer, good-looking.
In the first year of junior high school, Yang Ping'an's parents divorced. Her mother left Luchun to work in Jianshui, and Yang Ping'an was able to cut his hair short.
Yang Ping'an is the eldest daughter, and she also has younger siblings who go to elementary school. After Dad left Green Spring, there was no more news. They all lived in Sangu's home, plus Sangu's own two children, and the family had to raise five children.
Mom would always call at night. "My mother would ask me if I had enough money and if my relationship with my classmates was good." Before the words could be heard, Yang Ping'an's voice was already hoarse, and his eyes were red. She took the tissue That Livin had handed her, got up and walked to the corner, wiped away her tears with her back to the person, and adjusted her breathing.
Since the sixth grade of primary school, Yang Pingan's heart has occasionally throbbed, and now in the third year of junior high school, it has developed into a throbbing pain every few days, especially after exercise. She still has to participate in the school's daily running exercises, five laps, each more than 200 meters, with a slope.
The screening results showed that Yang Ping'an suffered from atrial septal defect with a size of 26 mm. Li Wen obviously felt that Yang Ping'an's physical strength was inferior to others: "When cleaning, we can carry a bucket of water, and she can only carry half a bucket."
At the beginning of this semester, Yang Pingan mostly returned to his cousin's house, and occasionally returned to the Sangu's house in the village, because the fare to the Sangu's house was relatively expensive, about 40 yuan.
Jianshui is about a four-hour drive from Green Spring, and Mother Roninle will return home from Jianshui once a month or two. Only when his mother returned home did Yang Pingan return to his home.
When she learned that her eldest daughter had been screened for congenital heart disease, Roninler was not surprised, as early as the fifth grade of the child, she knew that she just felt that "it didn't seem to be that serious". Aside from the initial medication, Roninler did not continue to act.
The eldest daughter once asked her mother if she needed to be checked for this disease. Roninler said, "Probably not."
Atrial septal defects are mostly absent in early childhood, but become more pronounced with age. In particular, large atrial septal defects can cause growth retardation, fatigue, edema, and dyspnea with active exertion. A small number of large atrial septal defects, if left untreated, may progress to irreversible pulmonary hypertension (i.e., Eisenmenger syndrome). Once surgery is missed, only oral medications for heart failure and pulmonary hypertension can be given.
However, children with poor cardiac function with pulmonary hypertension are vulnerable to life-threatening development of severe right-sided heart failure once they are co-infected. Even in the absence of an infectious cause, most people with Eisenmenger syndrome live between 20 and 50 years.
In other words, even if such a child has been careful and peaceful, he will be shrouded in shadows for the rest of his life. And those children who miss the opportunity to operate, if there is no good medical environment, are likely to lose their lives very early because of the congenital heart disease that is not diagnosed and treated in time.
After the divorce, Roninle went to work in jianshui's vineyard by himself, earning 80-90 yuan a day. The ex-husband never asked about the child's condition, nor did he give any living expenses, and he never heard from him. Luchun County People's Hospital had called to ask her about follow-up treatment, but she could not stop her work, and the three children in the family could only rely on her to raise her alone.
Moreover, Roninler could not speak Chinese, nor had she ever been far away, leaving Luchun to go to distant Shanghai for surgery, which was unimaginable to her.
There are still half a year to go to the middle school entrance examination, Li Wen wants to go to Jianshui to attend high school, and Yang Pingan wants to go to Mengzi.
"Is there any difference between Mengzi and Jianshui in your eyes?"
"It's bigger than Green Spring anyway." The two girls looked at each other and smiled, "I want to go out into the world."
This is the stupidest way to do it
Ma Yuzhen is Yang Ping'an's homeroom teacher and her favorite teacher and Liwen, "Although the teacher is very strict in class, he will joke with us in private."
Including Yang Ping'an, there are four children in her class who need surgery, and none of them have received free surgery. Ma Yuzhen did not inform the parents, after receiving feedback from the hospital, in order to avoid affecting the child's emotions, she privately called the parents to inform the parents.
In informing parents, Ma Yuzhen was extra cautious. She had a check-up when the doctor told her that the diagnosed child could not marry or have children in the future, and if she wanted to have children, it would be life-threatening.
Ma Yuzhen relayed the doctor's original words to the parents, who directly scolded her: "My child is fine, why do you say that he is sick?" Are you a teacher or a doctor?"
A few years later, the confirmed child still chose to marry and have children. "In the end, the children didn't have surgery, but they were fine, and you said I was a liar?" Ma Yuzhen said, "I don't dare to say more, I fulfilled my obligation to notify, and the rest was handed over to the doctor to inform."
At the stage of notifying parents of follow-up consultation, Zhang Guowen has to make several phone calls every day. However, the results are not significant, and even some parents will hang up when they hear Mandarin, and he can only turn to the teachers of the school.
"I'm in a hurry to listen to it, free treatment is such a good thing, why not go?" 」 Zhang Guowen's wife said.
"Perceptions are the hardest to change, and the most critical." Zhang Guowen said.
Teacher Cao Wenliang, who was in the next class, also had a student in need of surgery, who called and informed the parents: "Your child has heart problems and is going to Shanghai for surgery."
The parents reacted fiercely, and even resolutely refused: "My child is in good health!" Don't go, don't go! Don't say it!" After repeated explanations by the hospital and the school, the parents finally accepted the fact that their children were ill and chose to go to Shanghai for free surgery.
"Some parents think that their children are not obviously sick and think they are healthy. Moreover, there are many left-behind children, parents are working outside, and the children are not taken care of." A teacher told the health community.
Zhang Yaohua is no stranger to such things, and in the two and a half years since he came to Luchun, he has seen too many differences in concepts and incomprehensions. "You hear more than twenty thousand, more than two hundred, it's numbers. But for those who are really involved in poverty alleviation, this is a family, a living person." Zhang Yaohua told the health community, "Children with more severe symptoms, as soon as their parents hear that they have to go so far away for treatment, treatment is still risky, and they are likely to give up."
A year and a half later, the number of children with congenital heart disease receiving free treatment has stopped at 103 and has not grown.
The "silent other half" on the list remains silent. The Luchun County People's Hospital has long since returned to normal, and there are no more groups of parents who are anxious to follow up with their children, and there is no longer a bus seconded from Kunming City carrying dozens of children out of the county.
"It's too late today, and it's early and late tomorrow." This is the red slogan hanging on the gate of Luchun County People's Hospital.
Photo: The entrance of Luchun County People's Hospital
Asked what this slogan meant, Zhang Guowen smiled and sighed: "This, some can only be experienced by themselves, it is difficult to say."
On December 6, 2021, the paper related to the large-scale echocardiographic screening of the whole population was published online in circulation, the top international cardiovascular journal. Poor areas (OR 2.34, 95% CI 1.01 to 5.45) and poor families (OR 4.16, 95% CI 1.64 to 10.40) were independent risk factors for congenital heart disease that were not detected in time, while ethnicity was not associated with whether or not to miss diagnosis (OR 1.81, 95% CI 0.51 to 6.43).
After a year and a half, Zhao Quming used his time working in the Xiamen Branch of the Children's Hospital Affiliated to Fudan University to start the screening of congenital heart disease in school-age children again. Up to now, a total of more than 7,000 children have been screened, and it is expected that about 15,000 will be screened in the end.
The current results show that the number of initial confirmed cases screened in Xiamen is less than one-third of that of Luchun County, and most of them are mild or moderate, with only one case of rheumatic heart disease. The view that the incidence of congenital heart disease and rheumatic heart disease is related to the level of regional economic development has once again been confirmed.
Although the results of the screening for congenital heart disease in the population by standard echocardiography are more accurate, it is also the only way to accurately detect the condition as early as possible and reflect the true heart health status of local children. But Zhao Quiming believes that in most regions, especially in less developed areas, this method is not realistic. Traditional screening methods are still the main means of screening congenital heart disease, and he hopes to solve this problem by strengthening cardiovascular examination training in primary hospitals and improving the awareness of community doctors about congenital heart disease.
"In reality, it is really difficult to carry out a whole-population echocardiogram screening, which is a high-intensity physical work." Zhao Quming said, "In a matter of seconds, it is necessary to make accurate judgments and ensure that no diagnosis is missed, which is a great test of mental and physical strength, and it is difficult for medical institutions or medical staff to accept such screening work."
Luchun County is only a county in an underdeveloped area, and how many similar counties and towns will be better or worse, and no one dares to make a conclusion until the same indiscriminate screening is actually carried out.
"That's the stupidest way to do it." Zhao Quming repeatedly emphasized this point, "Like a machine, sitting there screening hundreds of times a day, almost no one wants to."
However, the method is the most stupid, but it is the most effective and precise.
The light of the candle cannot compete with the sun. However, the faintly pulsating fire of a candle can illuminate a corner that cannot be touched by the sun.
Every corner is waiting to be illuminated by a candle.
(In the text, Yang Ping'an, Li Wen, Luo Ningle, Ma Yuzhen, and Cao Wenliang are pseudonyms)
Author: Yuan Bingqing
Producer: Zheng Yujun
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