Baby death sparks debate on deformities
The story of a newborn baby with a harelip, who was killed by his grandfather in Shanghai’s Chongming County because of the deformity, shocked many people and raised questions about prenatal scanning services.
The incident has focused attention on da pai ji, which roughly translates as “screening for big deformities.” That refers to ultrasound scans that monitor the growth and development of a fetus and have long been a routine part of prenatal care in Shanghai.
News of the baby’s death initially provoked widespread condemnation on social media sites.
At Liba.com, a popular Internet community, nearly 300 Netizens closely followed the story and joined in a heated discussion.
“The grandfather shall go to hell!” wrote one Netizen.
But the outrage mellowed somewhat after details of the baby’s condition were made public. Beside a harelip, the baby had shorter arms and legs than his peers and sacral spinal stiffness.
Some online comments came to question the role of medicine in the tragedy.
“What if the hospital failed to detect the defects in the screening for big deformities?” wrote a Netizen who calls himself CC de Faxie Majia. “I feel sorry for the family.”
The tragedy revealed that many people in a one-child society sympathize with families who want a perfect child and also revealed that many people don’t fully understand the extent of prenatal screening.
Technology, of course, has been a big boon in assessing fetal conditions before birth.
Beyond just monitoring the size of a fetus, its placement in the placenta and the quantity of amniotic fluid, newer technologies enable doctors to see detailed structures of the fetus, which makes screening for deformities more possible, said Cheng Weiwei, vice president of the International Peace Maternity and Child Health Hospital of China Welfare Institute.
However, most local obstetricians agree that such scans still have their limitations and won’t necessarily diagnose every deformity in a fetus.
The tragedy of the baby boy in Chongming was just one example.
His parents, who went to regular prenatal checks at the small Baozhen Hospital in the county, were told their baby was healthy up until two weeks before the expected birth.
At that point, suspecting that fetus was too short for its age, the hospital advised the family to get further checks at a larger hospital. At the Chongming branch of Xinhua Hospital, more advanced testing found that the fetus had a harelip and sacral spinal stiffness. That diagnosis was confirmed by further tests at Shanghai Red House Obstetrics and Gynecology Hospital.
By then, it was too late for an abortion. The baby was born on July 14 and had an Apgar score of 10. The Apgar scale, a quick assessment of the health of newborn babies, is an acronym of the component factors: appearance, pulse, grimace, activity and respiration. A score of seven or above generally means a healthy child. A harelip is not a factor in the scoring.
But the harelip greatly upset the baby’s grandfather, who fed the child potassium chloride only three days after birth. The grandfather and a doctor who is suspected of having provided him the chemical have both been detained by police and face possible murder charges.
“It is a sad story,” said Dr Cheng. “Harelips, if not accompanied by a serious cleft palate, can be easily corrected. I think many people today mistake the purpose of ‘screening for big deformities. The scans are only for ‘big’ deformities, not all deformities.”
Such scans, she said, are done to discover serious congenital or fatal defects in a fetus, so that a family can consider whether to abort the child. Among those serious conditions are anencephalus, encephalocele, spinal bifida aperta, chest abdominal wall defects with exposed organs, monocardian and fatal achondroplasia.
Most ultrasound doctors are checking on problems beyond even those serious ones, said Ren Yunyun, director of the Ultrasonography Department of Shanghai Red House Obstetrics and Gynecology Hospital.
Though most families may see only the conclusion of “four chambers in the heart” in the report, the doctors usually also have checked all the attached vessels attached measuring between 3 millimeters and 5 millimeters in diameter.
“We try our best to help check as much details as possible, but still not every defect can be diagnosed through B ultrasound,” says Ren.
In the case of the Chongming tragedy, the president of the Baozhen Hospital, who was identified only by his surname Ji, told local media that his facility is a grassroots medical service only required to cover checks on the basic six fatal defects of fetuses. Even top hospitals in Shanghai have limited equipment and staffs for comprehensive prenatal screening.
Generally speaking, about 80 percent of structural defects can be detected and diagnosed, according to Dr Cheng. While the detection rate for anencephalus may reach 87 percent, the rate for finding serious congenital heart disease averages only 50-60 percent.
When fetuses are diagnosed as abnormal, many Chinese families tend to choose abortion, doctors said.
Dr Ren recounted the case of a mother who was told her fetus had a minor harelip. She was asked to return for a further test a week later but never showed up. Instead, she had an abortion at another hospital.
“I have personally come across many families who insist upon accepting only a ‘healthy’ baby,” said Dr Cheng. “But what is the definition of healthy? Nobody can guarantee the health of a child, even if it is born healthy.”
Minor infant defects can often be corrected without any threat to the baby’s health. Parents are told this in advance, but many still refuse to go ahead with pregnancies.
“There are more families accepting babies with small defects, thanks to related information popularization and examples of some celebrities, but they are non-mainstream,” says Dr Cheng.
According to the National Health and Family Planning Commission, abortion are permitted in cases of defective fetuses with biparietal diameters of less than 65 millimeters, but are banned for those with larger diameters.
However, even in banned cases, some families managed to find routes to abortions. Others simply abandon deformed newborns after birth. The grandfather in Chongming was an extreme case of family rejection.
“I can understand that many families yearn for the perfect only child,” Dr Chen said, “but I am strongly against haste and irresponsible behavior.”
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