Last month was World Down Dyndrome Day (世界唐氏综合征日, March 21) and next month marks China’s National Disability Day (全国助残日, May 15) – both are occasions when Chinese media pay extra attention to Down syndrome, a disorder that is slowly disappearing from Chinese society.
On World Down Syndrome Day, Chinese state media broadcaster CCTV wrote on its Weibo account: “Currently, medical science does not have effective prevention and treatment methods for Down syndrome, but it can be detected early through prenatal screening. You might have seen this kind of face: mouth slightly open, a blank expression, eyes somewhat wide apart,.. break your prejudices and understand them!” This text is accompanied by different facts about Down syndrome pictured with a cartoon baby on CCTV’s account page (pictured below).
“I’m still nervously awaiting the results of the amniotic fluid test,” one netizen responds to the post: “I hope my baby is healthy and normal.”
On Chinese social media, many expecting mothers express their worries about screening results and the health of their unborn child. But the ethical debate that is so alive in many other countries about Down syndrome screening and abortion seems practically non-existent in China. One Weibo user comments: “In foreign countries, there are many mothers raising kids with Down, because their religion does not allow them to abort the baby.”
THE LAST DOWNER
“New medical techniques and the ethical questions that come with it have caused ample discussion on Down syndrome in many nations across the world.”
Down syndrome (DS) is a congenital disorder caused by a chromosome defect, that exists in all regions worldwide. Children with DS often have an intellectual disability and are also affected physically in their appearance and general health. Down syndrome has an incidence of 1 in 600–1000 live births, differing per country (UN; Wang et al 2013, 273). The disorder was named after John Langdon Down, the British physician who first classified this genetic disorder in 1862. In Chinese, it is known as 唐氏综合征 (Tángshì zònghézhēng) or as 先天愚型 (Xiāntiān yúxíng), the latter literally meaning ‘naturally stupid-type’.
With new techniques, it has become easier for doctors to safely detect whether or not a fetus has Down syndrome. In many countries, women can now choose for first-trimester prenatal screenings that can indicate the likelihood they are carrying a baby with Down syndrome. These tests can be followed up with diagnostic tests, either through amniocentesis (amniotic fluid test) or a DNA blood test, that can give a conclusive answer. If the unborn baby turns out to have DS, parents often have the option to abort it.
These new medical techniques and the ethical questions that come with them have caused ample discussions on Down syndrome in many nations across the world. Denmark introduced national guidelines for prenatal screening and diagnosis as early as 2004, which has led to an all-time low of Danish infants with Down syndrome – 95%-98% of pregnant women choose to abort a fetus with DS (Vice 2015). This means that Down could become something of the past; not just in Denmark, but also in other countries that have followed its example after 2004.
According to anti-abortion media, what is happening in Denmark is a “targeted form of genocide.” In the United States, the test has also become a focus of controversy, as it is intertwined with America’s general debate over abortion.
In the Netherlands, a TV show revolving around ‘the end of Down syndrome’ was recently aired on national television. The series, that was titled ‘The Last Downer’, explored what society loses if Down syndrome disappears. It also talked about the ethical, social and psychological consequences of having a child with Down syndrome. ‘The Last Downer’ also triggered debate, as some critics deemed that it was too much in favor of the pro-life movement.
DOWN SYNDROME IN CHINA
“21% of abortions related to DS in China take place after the 28th week of pregnancy.”
In China, it is estimated that 1 out of 700 infants are affected with Down syndrome. Although this percentage is relatively low compared to other countries, it is an enormous figure nevertheless due to China’s huge population (Deng et al 2015, 311).
China’s Ministry of Health has promoted nationwide prenatal screenings for birth defects since 2003 (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 (Deng et al 2015, 315).
The detection of Down syndrome through prenatal diagnosis in China went from nearly 13% in 2003 to over 69% in 2011 – with urban women having better access to early screenings and diagnosis than women living in the more rural areas of China. Around 95% of women terminate their pregnancy after learning the baby has DS, which is close to similarly high numbers in countries like Denmark or Hungary.
What is different in China, is that abortions can take place up to the ninth month of pregnancy.* In nearly 80% of the cases where the DS diagnosis led to abortion, this termination took place before 28 weeks. In the other cases, the pregnancy was terminated later than 28 weeks; meaning that 21% of abortions related to DS take place after the 28th week of pregnancy (ibid. 2015, 315).** In, for example, the Netherlands, abortion can take place up to 24 weeks of pregnancy, which is determined as the moment after which a fetus would be able to survive outside the uterus. Denmark allows for abortions to take place until the 12th week of pregnancy.
Chinese doctors encourage screening more strongly when pregnant women are older. According to current regulations in China, pregnant women aged 35 or above will be suggested to have an amniocentesis test directly, and, as research points out, “most Chinese women opt to abort fetuses with malformations” (Deng et al 2015, 316). Overall, the prevalence of prenatal diagnosis of DS and the number of related abortions is higher in urban areas than in China’s rural areas due to better medical facilities in cities. This also suggests that the majority of babies with DS are now born in the countryside, where parents do not always have access to the medical care they need.
ABORTION IS OKAY
“Bright-pink advertisements on ‘painless abortions’ depict smiling women, butterflies and flowers.”
On Weibo, many netizens share their experiences with prenatal screening. One pregnant woman says the test has cost her 191 RMB (±30 US$), another netizen responds: “In my hometown, these screenings are free of charge!” Another Weibo user shares her anxiousness: “I’ve been worrying about this Down screening all week,” she writes on April 21st. The following day, she replies to the comments with crying emoticons.
Although the screenings are a big issue on Chinese social media, the ethical question of the abortions is seemingly not. This might relate to the fact that abortion is not as contentious in China as it is in many other countries.
Pregnancy termination became quite common in China during the 20th century in relation to the one-child policy. By now, China has the highest abortion rate in the world. According to the National Health and Family Planning Commission, 13 million abortions are carried out in China every year. The actual number is probably much higher, as the official number does not include the abortion numbers from private clinics, nor the estimated 10 million induced abortions per year through medicine (Xinhua 2014), nor the numbers of sex-selective abortions– a practice that has officially been illegal since 2004.
The prevalence of abortions in China has led to a booming industry focused on abortion procedures. Bright-pink advertisements on ‘painless abortions’ depict smiling women, butterflies and flowers.
Some even promise that the abortion will be over within ‘a dreamlike three minutes’ (for more on this read: Glamorous & Painless – China’s Booming Abortion Industry). Although China has a painful past when it comes to forced abortions, the personal choice for abortion is not as controversial as it is in many countries where the Down syndrome detection debate is more alive.
“I’m drinking fresh rosedew after my abortion,” one netizen writes: “It’s good for my cold womb.”
THE HARDSHIPS OF DOWN CHILDREN IN CHINA
“Giving a child with Down syndrome up for adoption is very difficult, as China’s DS children are generally deemed ‘unadoptable’.”
Besides the fact that abortion is considered relatively uncontroversial in China, the high rate of abortions for DS-diagnosed babies might also relate to the fact that disabled children face many difficulties in China due to stigmatization and practical hurdles.
Raising a handicapped child is a heavy burden for many parents in China, who receive little government support and often do not have the means to make sure their child gets the medical care and education they need. This means that abandoning the child sometimes is the only solution for parents to make sure their child is taken into an institution (Yoxall 2008, 25).
Giving a child with Down syndrome up for adoption is very difficult, as China’s DS children are generally deemed ‘unadoptable‘. Until recently, it was legally not possible to adopt a child with Down within China. Since this has now changed, international organizations like the Bamboo Project help parents who want to adopt a child with Down syndrome from China.
SCREENINGS FOR DOWN: ANXIETY & CONFUSION
“If your baby has Down syndrome, you can’t keep it – you do understand this, don’t you?”
In China’s urban areas, first-trimester screenings for DS (唐氏筛查) through a blood test have become practically mandatory. Some clinics have 100% screening guidelines for all of their patients, but do ask parents to sign for consent first; other hospitals simply proceed to include the test with general pregnancy check-ups without any permission.
Screening procedures differ per hospital and can be confusing for expecting mothers: “Today my doctor told me that because I am already 35, I should do an amniocentesis test,” one netizen writes on Weibo: “but the blood test in my first trimester indicated I had low risk of having a baby with Down. I’m very confused if I should do it or not.”
China’s screening procedures and prevalent attitudes on how to deal with a baby that possibly has DS can be shocking to some. A 31-year-old Dutch mum named Anna (alias), who lives in Shanghai, recently shared her experiences on Facebook. Anna, pregnant with her second baby, writes:
“I was unable to come on Facebook for some time due to problems with my VPN. During this period, I’ve come across something that I loathe even more than China’s internet censorship. “They’ve tried calling you but you didn’t pick up,” the Chinese nurse tells me while looking up from a form, as she points me to an examination room. I walk in, and ask the doctor what’s going on – I vaguely remember a ‘standard’ blood test (..) – “‘You have an increased risk for a child with a mental disability,’ the doctor straightforwardly tells me. ‘Excuse me?’ – I ask her to repeat her sentence. ‘The child might be retarded,’ she tells me.”
Anna writes: “In the Netherlands, the availability of prenatal tests for Down syndrome has caused quite some controversy earlier this year. It is not allowed for doctors to proactively encourage women to do this test unless there’s an increased risk for them to have a child with an intellectual disability – because they are above the age of 40, for example. But this is not the case in China, where every pregnant woman, no matter her age, is tested for heightened risk through blood screening. I ask the doctor what the test results are, since I’m only 31. ‘Well, that’s not like being 21 anymore, now it is?’ she snarls at me.”
Anna explains that the results of her blood test showed there was a 1-in-200 chance her baby had Down syndrome. After informing Anna about this, the doctor says: “You can choose if you now want an amniocentesis or a DNA test. The first is more expensive and needs to be done in a private clinic, here’s an information leaflet, just think about it.”
She chooses to do the DNA test, which is safer for mothers and their unborn babies than the amniocentesis. She says: “I was initially just shocked to hear there was an increased risk for me to have a child with a disorder, but it also bothered me that the initial screening was done without my consent. I ask the doctor what happens if my baby turns out to have Down syndrome. ‘Then you can’t keep it,’ she gives me a piercing look: ‘You do understand this, don’t you?’”
Anna writes: “She advised me to timely book a possible abortion, but that the procedure would be possible until 32 (!) weeks.” Anna receives the DNA test results a week later through text message, and her baby shows no signs of abnormalities. Despite her relief, she feels uncomfortable about the intrusive way in which her prenatal screening and its possible outcome was handled.
Another foreigner living in Beijing told What’s on Weibo they also were tested for Down syndrome risks in the first trimester of pregnancy at Beijing United hospital without being asked for permission first. Although they were surprised to get the results, they did not react strongly to it as the test turned out to be very low risk.
Although the ethical debate on this issue is generally lacking from mainstream media, one story did make headlines last year when a woman from Hubei was determined to end her pregnancy at 16 weeks because of the Down syndrome screening. The initial blood screenings showed an increased risk of DS, and the woman arranged an abortion – in spite of the doctors convincing her that she should wait for the actual diagnoses screening first. This story also shows how intertwined prenatal screenings and abortion have become.
DS IN CHINA: TABOOS AND SOCIAL STIGMA
“I think my sister’s baby has Down syndrome, but I am too afraid to ask her.”
Chinese netizens share their experience with Down syndrome on various online message boards. One netizen tells how it is growing up with a brother with Down syndrome. “My brother was born prematurely and was in weak health. The doctor told my parents to just give up on him. But my father refused to give up, because it was a boy, and he thinks boys are worth more than girls. So my brother lived.” The netizen tells how his parents were told by doctors that their child was simply “hopeless”, and that his brother was always teased in school.
On message board Douban, multiple netizens share how doctors encourage couples to have an abortion if their unborn baby is diagnosed with DS. The discussion of Down on Chinese social media shows that DS is heavily stigmatized and that it is sometimes also considered a taboo. Some netizens tell about former classmates with Down who were constantly bullied, and one netizen writes: “I think my sister’s baby has Down syndrome, but I am too afraid to ask her.”
Now that rapidly advancing medical techniques have decreased the prevalence of DS in China, chances are that the less common the disorder is, the more stigmatized it will become. It is also probable that over the next one or two decades, if rural areas get better access to medical care, Down syndrome will altogether disappear from China.
For China’s upcoming ‘day for the handicapped’, multiple organizations try to raise more public awareness for Down syndrome. This year, the day will specifically focus on handicapped orphans. For this occasion Chinese media recently wrote about an orphanage in Tianjin, where one-third of all children are Down syndrome babies who were left behind by their parents.
Although the article describes children with DS as little “happy angels”, one Chinese birth clinic seems to think otherwise. In their ad (see image), their message is loud and clear: “Reject children with Down syndrome! Give birth to a healthy baby!” Angels or not, modern-day China seems to have no place for Down syndrome children.
Wang, S.-S., Wang, C., Qiao, F.-Y., Lv, J.-J. & Feng, L. 2013. “Polymorphisms in genes RFC-1/CBS as maternal risk factors for Down syndrome in China.” Arch Gyneocol Obstet 288: 273-277.
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.
Yoxal, James W. 2008. China’s Social Policy: Meeting the Needs of Orphaned and Disabled Children. Master Thesis, Union Institute & University.
NB: other references are linked to in-text.
* As written by Deng et al (2015): “Following a systemic and standardized diagnostic process, pregnancy affected by severe anomalies such as DS is allowed to be terminated at any gestational age following informed consent” (312).
** According to 2003-2011 surveillance data, study by Deng et al uses data from the Chinese Birth Defects Monitoring Network.
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Coca Cola Introduces “Ocean Plastic Bottles” to Combat Marine Waste Problem
Coca Cola’s innovative ocean plastic bottles have become top trending on Weibo.
As Coca Cola introduced the world’s first bottles made from recycled ocean plastic waste this week, the topic has risen to the top trending on China’s Sina Weibo.
As reported by Business Insider, Coca Cola has released 300 sample bottles showing the potential of its new technology that is able to transform lower-grade recycables into high-quality food packages.
The Coca Cola bottles were produced using 25% recycled marine waste, collected by volunteers and fishermen during 84 beach cleanups in Spain and Portugal, the report says, with the company’s long-term goal being to have all its plastic bottles be made from 50% recycled plastics by 2030.
Coca Cola will start to use more recycled plastic for its bottles from 2020 on.
With the topic now having reached 140 million views on Weibo, many people are discussing the issue. The majority of commenters applaud the environment-friendly initiative, but there are also some who say they fear the bottles would somehow contain “more pollutants” or start to “taste like the ocean.”
Others write they do not necessarily want to drink Coca Cola, but would like to obtain one of their ‘ocean plastic’ bottles as a collector’s item.
The Chinese news reports about the new Coca Cola initiative raise awareness on the problems of how plastic waste in oceans jeopardizes marine life.
“Environmental problems require immediate action,” one Weibo users writes: “A good company will take on the responsibility to do something.”
Some 200 billion plastic bottles are sold in China every year – many of them are already being recycled. Coca Cola, however, will reportedly be the world’s first company to use ocean plastic waste for its bottles.
Coca Cola is an important player in the Chinese beverage market; the company has introduced more than 60 products under 20 brands within mainland China.
By Manya Koetse
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Over a Third of China’s Babies Are Delivered via C-Section – The National Health Commission Wants to Change That
Fear of pain is a major reason for nonmedical cesarian deliveries on maternal request.
In 2018 the percentage of deliveries by cesarean was 36.7% in mainland China, according to the latest Report on Women’s & Children’s Health (中国妇幼健康事业发展报告) that was launched by the National Health Commission on May 27.
This means that together with Hong Kong, Taiwan, Brazil, Egypt, and Turkey, the People’s Republic of China (PRC) now has the highest C-section rates in the world.
A World Health Organization report from 2010 estimated that 46% of Chinese babies were delivered via C-section. In 2017, another study found that this percentage was incorrect, although some urban and wealthier regions in China, such as Shanghai, did see C-section (CS) rates as a high as 68% (Black & Bhattacharya 2018, 1; McNeil 2017).
China’s CS rates have recently become a hot topic in Chinese newspapers and on social media. On May 27, the National Health Commission of the People’s Republic of China held a Beijing news conference in which Qin Geng (秦耕), the director, announced that more actions will be taken to encourage natural childbirth among Chinese women.
These actions will, among others, include stricter regulation of cesarian section operations and the provision of more support and pain relief for laboring women, as well as a higher hospital income for natural births. The National Health Comission hopes to significantly reduce the number of unneccesssary C-sections without medical indication in this way (Beijing News 2019; Caijing 2019).
Since 1985, the international healthcare community has considered 10-15% to be “the ideal rate” for C-sections, of which the highest percentage are those CS deliveries with medical indications that can actually save the lives of mothers and babies.
Although the worldwide rates for CS deliveries have increased throughout the years, there is no evidence for the benefits of nonmedically indicated C-sections for women or children, according to the World Health Organization.
This is not the first time Chinese authorities try to combat the country’s high CS rates. After reports by the World Health Organization from 2010 and 2015 pointing out the potential hazards of unnecessary C-sections, there have been various state efforts to reduce the number of nonmedical cesarian surgeries.
Besides the introduction of free prenatal education classes, these efforts included monitoring public hospital CS rates and removing bonuses or cutting portions of a hospital’s income once their CS rates reached a certain threshold (e.g. 40%) (Wang 2017, 3). These government initiatives seem to have had effect: the country’s C-section growth rates have slowed down, but were not decreasing yet.
Since the Chinese government announced an end to its one-child policy in 2015, lowering cesarean sections rates has become a more urgent matter, as Chinese couples are now allowed to have a second child.
Although various studies from mainland China and beyond challenge the idea that nonmedical C-sections are less ‘safe’ than vaginal births for single deliveries, this risk changes when a woman who previously had a CS section plans another pregnancy: multiple cesarean sections are associated with additional risks including CS scar rupture and abnormal placental invasion (Biler et al 2017, 1074; Black & Bhattacharya 2018, 2; Liu et al 2015, 817).
Why So Many C-sections in China?
But why does China have such a high cesarian delivery rate at all? Since the early 1990s, mainland China saw a more dramatic rise in CS rates than, for example, the USA; from less than 10% (with only 3.4% in 1988), China went to one of the highest in the world (Hellerstein 2011; Wolf 2018, 13).
The answer to why this is, is not so straightforward and relates to socio-economic changes as well as cultural factors that come into play.
One reason is that there is a general belief in the ‘safety’ of cesarian births that influence women’s choices for a (nonmedical and planned) C-section (Black & Bhattacharya 2017, 2).
An insightful study into this matter is that of researcher Eileen Wang (2017), who found that anxiety about giving birth and fear of pain is also a major reason for nonmedical cesarian deliveries on maternal request, especially considering that only a minority of Chinese women are given any form of pain relief during labor. Besides traditional concepts, this is also because China faces a shortage of anesthetists and because obstetricians are not always well-informed to prescribe other forms of pain medication (2017, 5).
As noted by Wang, epidurals are denied to laboring women not just because anesthesiologists are too busy, but also because of various other factors: different from a scheduled C-section on their agenda, they are not always available during nighttimes and in weekends to administer anesthesia to women in labor, do not have the time to monitor a patient for hours during labor (whereas a cesarean could be done in an hour), or were not even trained to administer epidurals (2017, 5).
According to Wang, the concerns about labor pain result in more requests for C-sections, both before and during labor. With relatively low awareness and availability of labor pain relief methods many Chinese women simply opt for a C-section as a way to control their pain.
But there are also other factors that contribute to the relatively high rate of women requesting C-sections for nonmedical reasons. One of them is the importance placed in the astrological calendar: having a baby on that one ‘lucky day’ or within that ‘lucky year’ is considered enough reason to plan a cesarian birth for many Chinese families.
In early 2015, ahead of the Chinese New Year, many women rushed to the hospital to make sure their baby was born in the Year of the Horse (2014) as the Year of the Goat (2015) was coming up. There is an old Chinese saying that nine out of ten people born in the Year of the Goat are incomplete and will suffer from great misfortune throughout their life (“十羊九不全”).
Another factor that leads to more cesareans on maternal request relates to the existing concerns among women that vaginal delivery will affect their figure or sex life (Wang 2017, 2).
Responses on Chinese Social Media
Since the Beijing news conference of May 27, the hashtag “Reducing Unnecessary Cesarean Section Surgery” (#减少非必需剖宫产手术#) has taken off on Chinese social media.
“What do you call ‘unnecessary cesarian’?” one of the most popular comments said: “Isn’t it that so many women in labor choose to have a C-section because natural childbirth is too painful?”
Other commenters also called for a normalization of pain relief in labor, saying that the high percentage of C-sections lies in the fact that Chinese women lack access to “wútòng fēnmiǎn” (无痛分娩) or “painless birth,” meaning vaginal delivery with pain relief.
Some Weibo users also stress that women should have the freedom of choice on how they wish to give birth, saying: “C-section or natural should be my own choice” and “If you leave me no choice I might as well not give birth at all.”
Multiple commenters write: “The lower the C-section rate, the higher the suicides,” referring to an incident that occurred in Shaanxi in 2017 when a pregnant woman committed suicide by jumping from the fifth floor of the hospital after she was allegedly denied a CS delivery.
Other Chinese netizens also complain about the fact that it seems to be men who are promoting the new policies to combat the high C-section rates, writing: “Isn’t there a way to have them suffer the pain of labor instead?”
In her study, scholar Eileen Wang also argues that the lack of pain relief is one of the major issues that should be addressed by policymakers who are hoping to reduce the number of C-sections in China. Further improving the childbirth experience by, for example, integrating a midwifery model, is also essential in making natural childbirth more attractive for Chinese women, Wang argues.
For now, many hospitals in China are still offering C-section “packages”: some prices start at RMB 5800 ($840) for a C-section, other hospitals have packages that start from RMB 88,000 ($12,741) including a three-day hospital stay in a private room.
“It’s a pregnant’s woman body, so she should decide how she wants to deliver her baby,” one commenter on Weibo writes: “It should be a woman’s right to decide.”
By Manya Koetse
Biler, A., Ekin, A., Ozcan, A., Inan, A. H., Vural, T., & Toz, E. 2017. “Is It Safe to Have Multiple Repeat Cesarean Sections? A High Volume Tertiary Care Center Experience.” Pakistan Journal of Medical Sciences 33(5): 1074–1079.
Black, Mairead & Sohinee Bhattacharya. 2018. “Cesarean Section in China, Taiwan, and Hong Kong— A Safe Choice for Women and Clinicians?” PLOS Medicine 15(10): 1-3.
Caijing. 2019. “卫健委：全国剖宫产率为36.7% 积极推广分娩镇痛.” Caijing , May 27 http://economy.caijing.com.cn/20190527/4591594.shtml [5.31.19].
Hellerstein, Susan Celia. 2011. “Cesarean Delivery in China Analysis of Cesarean Deliveries Without Indication.” The American College of Obstetricians and Gynecologists: 20s.
McNeil, Donald. 2017. “Study Finds Lower, but Still High, Rate of C-Sections in China.” New York Times, Jan 9 https://www.nytimes.com/2017/01/09/health/c-section-births-china.html [6.2.19].
Wang, Eileen. 2017. “Requests for Cesarean Deliveries: The Politics of Labor Pain and Pain Relief in Shanghai, China.” Social Science and Medicine (173): 1–8.
WHO. 2015. “WHO statement on caesarean section rates.” World Health Organization, April https://www.who.int/reproductivehealth/publications/maternal_perinatal_health/cs-statement/en/ [6.2.19].
Wolf, Jacqueline H. 2018. Cesarean Section – An American History of Risk, Technology, and Consequence. Baltimore, Maryland: Johns Hopkins University Press.
Featured image by Sohu News.
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