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Chinese Baby Girl’s Birth Defect Raises Discussion on Prenatal Screening Accuracy

The birth of an infant with physical abnormalities, despite recurrent prenatal screenings, has sparked discussions on Chinese social media. A running investigation will reveal whether the hospital can be held accountable.

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The birth of an infant with physical abnormalities, despite recurrent prenatal screenings, has sparked discussions on Chinese social media. A running investigation will reveal whether the hospital can be held accountable.

A Chinese baby girl has made the news after she was born with birth defects, despite 8 prenatal screenings allegedly showing no health problems in the unborn infant.

On August 26, the 26-year-old Youping Lin from Shenzhen gave birth to a baby girl. Although the woman told Chinese media the labor went well, she was shocked to learn her newborn had severe psychical abnormalities, with the right side of the face missing the nostril and ear. The baby’s right eye is also closed, Lin said.

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The baby girl, born in Shenzhen on August 26.

According to The Paper and Legal Evening News (November 8), the girl’s birth defects nearly made her mother “collapse” and has made her clinically depressed.

 

“In a total of 8 prenatal screenings and 5 ultrasounds, doctors repeatedly told Lin that the unborn baby was perfectly normal.”

 

In a total of 8 prenatal screenings and 5 ultrasounds, doctors told Lin that the unborn baby was perfectly normal.

A running investigation by a third party institution [not further defined in Chinese media reports] will reveal if the hospital can be held accountable for the baby’s birth defects.

Youping Lin got pregnant in late 2015 and went for her first prenatal testing in February of 2016 at the Futian Renmin Hospital in Shenzhen. The ultrasounds included one 3D ultrasound. At the time, the view on the right side of the unborn baby’s face was blocked by its own hand. Nevertheless, doctors told the mother the unborn baby was completely normal.

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According to The Paper, hospital representatives have stated that they have used all possible prenatal screenings to detect abnormalities. They also said that although it is extremely rare for birth defects such as these to go unnoticed in prenatal screenings, they cannot be completely ruled out.

A similar news story also came out earlier this year, when a woman gave birth to a baby that was missing one arm. The distressed mother told reporters that repeated ultrasounds also did not spot the fact that her unborn baby had a birth defect.

 

“In China, approximately 900,000 infants are born with a birth defect or disability every year.”

 

Worldwide, 6% of annual live births are affected by birth defects. China has a relatively high occurrence; approximately 900,000 infants are born with a birth defect or disability every year, which is around 5.6% of total newborns (Liu et al 2016, 3615). Pregnancy affected by serious anomalies is allowed to be terminated at any time of the pregnancy in the People’s Republic of China (Deng et al 2015, 312).

On the Sina Weibo social media platform, the case has led to a discussion on who is responsible for the child’s physical abnormalities.

Many commenters think that the hospital is responsible: “The fact that the doctor said the unborn child was normal, even while the right side of the face was blocked by its hand, shows that they had a low sense of responsibility; that was just wishful thinking,” one netizen comments.

“After 8 prenatal screenings, this did not come out?!”, another Weibo user comments.

As reported by The Paper, hospital representatives have admitted that doctors would normally do a second 3D ultrasound if the fetus is not fully visible in the first one, but that this was not done in the case of Youping Lin.

“Poor baby girl! Is there no way to do plastic surgery? The doctors should help,” one commenter says.

“This is up for the law to decide. Who ever is responsible should take responsibility,” another Weibo user comments.

“But how can this be compensated for?” another netizen wonders: “In the end, it is the child and its family that will suffer. What kind of compensation will lessen their suffering?” Others also agree, writing: “What does it matter who is responsible? What matters is what will happen to this girl.”

 

“Some families consider their disabled child a shameful secret to be hidden.”

 

Giving birth to a child with severe physical abnormalities and/or disability has a huge impact on Chinese parents and families. People with disabilities are often stigmatized in China. A large number of disabled young children have no access to education because schools refuse to accept them.

Due to the ubiquitous stigmatization and discrimination, some families even consider their disabled child a “shameful secret to be hidden” (Coonan 2016).

Another major burden to Chinese households living with a child with a birth defect or disability is that it greatly affects their living standard. Without access to public welfare, medical treatments can be very costly or even unaffordable to some families. In Disability Policy in China (2016), the director of a large State Child Welfare institution is quoted telling about a 4-year-old girl that was abandoned at the Tianjin Railway station; the institution’s staff found that the girl had already had two major surgeries and that she needed just one more operation in order to survive (Mendes & Srighantan 2009, 1).

With such heavy burdens, many expecting parents will choose to terminate pregnancies when the unborn baby is diagnosed with a birth defect. In the case of Down Syndrome, around 95% of Chinese women terminate their pregnancy after learning the syndrome is detected in the fetus.

China’s Ministry of Health has promoted nationwide prenatal screenings for birth defects since 2003 (Deng et al 2015, 312). As pointed out in recent Chinese research, there has since been a sharp increase in the percentage of prenatal diagnosis and consequential birth termination (ibid., 315).

 

“Poor baby, I hope the parents will not ignore her and take care of her.”

 

Many Chinese netizens reflect on this news story and think about their own family. Discussions about the ethical issue of possible abortion for fetal abnormality, that is more prevalent in western countries, seem practically absent on Chinese social media. One of the main issues under discussion is the cost of prenatal screenings and their trustworthiness – this story concerned many mothers-to-be: “As an expectant mother, this news really worries me,” one woman replies.

Another person writes: “I am so very happy my baby is healthy. I also feel bad for this family that will be so burdened from now on, poor girl.”

“Poor baby, I hope the parents will not ignore her and take care of her,” one commenter says. Other Weibo users are also concerned about the girl’s future: “What will her life look like? She will endure much pain, just as her parents.”

– By Manya Koetse
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References

Coonan, Clifford. 2016. “Paralympic success challenges China’s attitude to disability.” Irish Times (October 3) http://www.irishtimes.com/news/world/asia-pacific/paralympic-success-challenges-china-s-attitude-to-disability-1.2813993 [8.11.16].

Deng, C., Yi, L., Mu, Y., Zhu, J., Qin, Y., Fan, X., Li, Q. & Dai, L. 2015. “Recent trends in the birth prevalence of Down syndrome in China: impact of prenatal diagnosis and subsequent terminations.” Prenatal Diagnosis, 35(4): 311–318.

Liu, Q.-G., Sun, J., Xiao, X., & Song, G.-R. 2016. “Birth Defects Data from Surveillance Hospitals in Dalian City, China, 2006-2010.” The Journal of Maternal-Fetal & Neonatal Medicine, 7058 (November): 1–22.

Mendes, Errol, and Sakunthala Srighantan (ed). 2009. Confronting Discrimination and Inequality in China: Chinese and Canadian Perspectives. Ottawa: University of Ottawa Press.

NB: other references are linked to in-text.

©2016 Whatsonweibo. All rights reserved. Do not reproduce our content without permission – you can contact us at info@whatsonweibo.com.

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Manya Koetse is the editor-in-chief of www.whatsonweibo.com. She is a writer and consultant (Sinologist, MPhil) on social trends in China, with a focus on social media and digital developments, Sino-Japanese relations and gender issues. Contact at manya@whatsonweibo.com, or follow on Twitter.

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China Health

Exam Room For HIV-positive Students Sparks Social Media Storm in China

For the first time ever in China, HIV-positive students will take the national college exams in a separate examination room at a special school in Linfen, Shanxi. News of the segregated exam site has triggered intense debate among Weibo netizens over the past few days.

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For the first time ever in China, HIV-positive students will take the national college exams in a separate examination room at a special school in Linfen, Shanxi. News of the segregated exam site has triggered intense debate among Weibo netizens over the past few days.

Linfen Red-Ribbon School, the only special school for HIV-infected children in China, sparked a social media storm in early June when Shanxi Daily reported that its students would take their national exams in a special exam room, instead of taking it at the standard local exam site together with other students.

The Red Ribbon School was established in December of 2011, and has since been included in the national education system. The Institute offers free food, dorms, medical services, and psychological treatment for its 33 students, who come from all over China.

China’s national college exam, better known as the gaokao (高考), is the National Higher Entrance Examination. For most students, it is the most important exam of their life.

The Red Ribbon School received official authorization to let 16 of its students take the national exam within the school premises. The students have lived and studied at the Institute since 2004. All prerequisites for the official exam, including CCTV and surveillance equipment, have now been installed in two designated gaokao rooms. There are separate rooms for candidates in liberal arts and science.

The idea for the special exam site was originally suggested by Guo Xiaoping, the school’s headmaster. People with HIV often still face severe stigma and discrimination in China. “It is unrealistic to prevent all discrimination in modern-day society,” Guo said in an interview with the Shanxi Daily: “Some people might object to taking tests together with our students. It was my proposal to set up a separate place for them, and it was then approved by the education and exam council. The establishment of this examination site is of major significance.”

But not all netizens agreed on the helpfulness of separate exam rooms, and it triggered wider debates on the existence of the school itself. One Chinese web user objected: “’Red-Ribbon school’? Giving the school this name is like screaming from the rooftops ‘these kids are sick!’ This institution is unprecedentedly wicked rather than meaningful.”

Another person ridiculed the exam arrangements, pointing out that it reinforced discrimination instead of eliminating it.

There are also many people who approve of the school; but also because they are worried about their own ‘safety.’ On the Weibo page of Chinanews, the comment that received the most ‘likes’ explained a concerned parent’s perspective: “Would you feel safe knowing your kid is playing with those HIV-positive children? They are so little and don’t know how to protect themselves. Something might happen that leads to contact with blood.”

“I bet that half of the comments here are just out of political correctness. To be honest, I don’t want to live with HIV-students in the same college because I’m afraid that I might have some dangerous physical contact with them without even knowing it.”

There are also Weibo commenters who support headmaster Guo Xiaoping. “He’s a great man who quit his job as the president of the Linfen People’s Hospital to devote himself to building this school to help HIV-infected kids receive a proper education. It is really unfair to talk badly about such a kind old man and these poor children.”

In 2014, over half a million (501,000) of China’s population were reportedly living with HIV. Although the number of HIV cases is relatively low in China, this has also intensified existing stigmas and fear (see this 2009 study on stigma and discrimination among people with HIV in low HIV-prevalence contexts).

HIV-infected children in China are often forced to drop out of school because of poverty, discrimination, and poor health. In 2014, the 8-year-old HIV-infected Kunkun made headlines when he was banished from his village for the ‘safety’ of his neighbors. He later found a new home at the Red Ribbon school.

Sixth Tone recently reported that many workers with Chinese Hepatitis B seek body doubles to pass health checks in the workplace to avoid discrimination. Similar practices also occur with HIV carriers. Taboos surrounding the disease are so strong that some Chinese doctors still fear treating HIV/Aids patients, despite anti-discrimination rules.

Looking at the many comments on Chinese social media about the facts and falsehoods about HIV/Aids, it is clear that there is still a long road ahead for HIV awareness in China – especially because sexual education is still a controversial topic.

Through an open letter online, one of the students of the Red Ribbon School also gave their view and final say on the matter. They wrote: “I just want to go to college, achieve my dreams and pay back those who love me. The nearer the gaokao is, the heavier my heart feels. So many questions have been troubling me: whether I will be accepted to a university, if the teachers will accept me as a normal student, and whether my classmates will study and live with me.”

The students of the Red Ribbon Schools will be taking their exams on June 7 and 8. One 19-year-old Weibo netizen wishes the students the best: “As a Linfen resident, this moves me to tears, and I am proud of Linfen. All these keyboard warriors need to shut up and stop discriminating. You can’t deprive these students of their rights. I wish them all the good luck for their exams!”

– By Yue Xin
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Additional editing by Manya Koetse
©2017 Whatsonweibo. All rights reserved. Do not reproduce our content without permission – you can contact us at info@whatsonweibo.com.

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China Health

Another Hospital Scandal: Nanchang Doctor Asks Woman for More Money during Abortion

A news story about a doctor forcing her patient into paying more money during an abortion procedure has sparked anger on Chinese social media about illegal practices at Chinese hospitals.

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A news story about a doctor forcing her patient into paying more money during an abortion procedure has sparked anger on Chinese social media about illegal practices at Chinese hospitals.

A second-year female student named Xiao Chen (小陈) from Nanchang became a much-discussed topic on Weibo on April 11 when she told journalists about her traumatic experience while she was undergoing an abortion at a Nanchang hospital (南昌建设医院).

During the surgery, the doctor asked her to pay more money to undergo another procedure. When she declined, the doctor moved the medical instrument inside her, causing excruciating pain that did not stop until the girl agreed to pay for the second procedure.

“I had only come in for the abortion and did not understand why I would have to undergo another procedure,” the young woman told Pear News. Xiao Chen paid 2800 RMB (±405US$) for the abortion.

The doctor allegedly told the girl she had cervical erosion and that she needed a second procedure for that, costing an additional 4000 RMB (±580US$). The college student told the media that she could not afford that amount of money and that she initially declined and told the doctor to stop the surgery altogether, but that the doctor hurt her until she agreed to go forwards.

When journalists went to interview the doctor, she denied the incident occurred and offered them a red envelope with money to keep the story out of the press. The envelope was declined by the journalists, who included the bribery incident in their report.

The doctor at the Nanchang hospital offered journalists a bribe to keep the story out of the news.

On Weibo, the report ignited a storm of criticism; but the discussion soon derailed with netizens discussing the fact that the girl had an abortion in the first place. “This is not about her having an abortion, it’s her life, this is about the hospital using these kind of violent measures to force people into agreeing for a procedure,” one person said.

“This doctor should be forced and never allowed to practice a medical profession again,” a typical comment read.

Hospital scandals frequently become trending topics on Chinese social media. In late 2016, the personal account of a young woman’s horrific plastic surgery experience, during which she was sexually molested by a doctor in Shanghai’s Ninth People’s Hospital, also went viral on Chinese social media.

On the website of Nanchang hospital its abortions are promoted as being “painless” (see featured image).

“This girl is really brave for coming out about what happened to her,” one person writes: “She needs to stand up for her rights.”

According to the People’s Daily, the hospital has promised to compensate the young woman for what has happened.

– By Manya Koetse

©2017 Whatsonweibo. All rights reserved. Do not reproduce our content without permission – you can contact us at info@whatsonweibo.com.

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