Is the defective baby, go or stay?The United States and Japan choose to do this

The arrival of new life can usually bring extremely joy to a family.

However, what if this is a defective new life?

As a parent, do you have the courage to bear the burden of defects?

As a doctor, do you have the courage to face the difficulty of treatment?

As an ordinary person, do you have the courage to take on the moral and socio -economic problems brought by the defects?

September 12th is the "China Prevention Flack Day". For birth defects, it is never as simple as choosing "life" or "death".A father told us with his real experience that when facing a flawed new life, what kind of choice he was facing.

"Don’t be willing, I choose to let" defect "come to the world"

In Tianjin in 2010, my wife became pregnant in the fifth year after marriage.This child is hard to come, carrying our expectations and hope.We notified the news that grandma, uncle, father -in -law, mother -in -law, aunt … everyone was happy and blessed for the arrival of new members of the family.

However, during a prenatal examination, the doctor found that the fetal spine was straight and informed us the possible harm, and suggested whether we consider choosing to give up the fetus.

This is the child we look forward to for 5 years. Although it can only be seen on the B -ultrasound, it is also our child.Out of reluctance to our children, we did not kill the child and decided to take the risk.

Finally, the child was born in the expectations of his parents and was a beautiful baby girl.

However, my daughter was found to have many very serious problems in addition to the straight spine after birth -multiple fistula, high anus atresia, the heartplaces of the heart of the heart, the spine thoracic spine, etc.Waiting for the disease, unable to eat, or defecation, it is a serious disability in the defects.

"It is recommended to give up treatment."

At that time, the Tianjin Children’s Hospital was diagnosed with us to abandon treatment.Because there is no anus, the child cannot be excreted, the belly has swelled very well, and often has a fever. The dehydration occurs, and the small body is thin and dry.

"This child’s face is beautiful and very flattering. In the future, he must be a big beauty. Who knows the disease on the disease." The medical staff who took care of my daughter couldn’t help but sigh when she saw my sleeping daughter.Yeah, why is my daughter on this disease?Every day, in order to survive, she was inserted in a lot of pipes, a lot of needles, taking a lot of medicine, and may have an endless surgery in the future.

The doctor told us that even if he was treated, his daughter was still likely to urinate for life and needed to live with a dung bag for a lifetime.This is painful for a girl. Parents are not willing to see the child’s pain and live, and would rather give up.

Considering that the treatment process was too painful to our daughter, we finally chose to give up treatment and send the daughter to the end of the caring hospital.

Who can decide the life and death of "defect"?

This baby girl later called "small hope" by netizens. After the child’s situation was exposed on the Internet, it attracted the attention of netizens and the media.

On the one hand, after learning the story of "small hope", netizens began to raise funds actively, hoping to participate in the treatment, and some volunteers tried to lobby their father’s father to give up the monitoring.On the other hand, the staff of the Children’s Social Rescue Working Committee also communicated with the father of "Little Hope" for many days, but they could not persuade them to continue treatment.

"The child’s father is going to grab her back, you are coming!"

The turning point of the matter occurred on February 4th. Netizens in the QQ group of Baby returned to the QQ group to convene each other and plan "rescue" for baby girls.In the early morning of the 5th, five volunteers could not bear the "small hope" and were abandoned, and the "crazy rescue" -rushed to the hospital, claiming to be a child’s mother, blocking the staff of the hospital, and took the child to drive to a hospital in Beijing for 3 hours.Admitted to the hospital.

The "small hope" incident was included in Baidu.| Network screenshot

"Can’t infringe her right to survive in the name of love!"

On February 6, the volunteer "Small Hope" who personally took the "small hope" in person, "Deep Sea Water Demon", stated that she wanted to adopt "small hope".Transfer the "small hope" monitoring right.Regarding the "grabbing baby" behavior, volunteers believe that if they are not invalidated by many negotiations, they will not make this strategy.

On February 12, the family of "small hope" went to a hospital in Beijing and asked the children to take the child to sign the postal formalities of the baby girl.

On March 27, "Little Hope" died unfortunately.

"Children and parents are ordinary people, and their character feelings are also very good. I am very unfortunate when they encounter such a thing, but even more unfortunately, they encounter a group of madmen who are unreasonable ()! The child is born unfortunately, and he can have calmly.Once the come, they left quietly when they had no memory, but were snatched by this group of people in the name of "love". "I feel angry about the accusations of children’s parents on the Internet and media.

In 2013, as the protagonist of the "Baby Get Baby" incident, netizens "Deep Sea Water Demon" (Chen Lan) published and published the book "Little Hope" in the book.Abuse of children.And set up the "Little Hope Foundation".

Chen Lan’s blog.| Network screenshot

Netizens’ Tang Seng posted a post and questioned the beginning and end of the incident of "Chen Lan’s treatment of anal -free baby girls".Some netizens questioned that Chen Lan’s "grabbing baby rescue" was a show, and he said that he had a suspicion of consumer defects for the establishment of a foundation.

It is equivalent to the logic of the father default -the child was born, and he had the right to determine the child’s life and death.Such logic is wrong, which not only violates the moral requirements of a civilized society, but also suspected of serious violations.

The treatment of "small hope" originated from the hope of a family. The middle yin and yang were catalyzed by the hope of countless netizens, and eventually evolved into a "baby grabbing" incident that was abducted by public opinion morality.With the departure of "small hope", it is still a non -solution problem that "who can decide the defect for life and death".

For defects, there is one on average every 30 seconds

Shi Yan and her husband have always been healthy, not smoking, drinking and not staying up late. The two have always wanted their children after marriage.After finally being pregnant, all kinds of production inspections in October were successful, but the child came out in his life, and his mouth five officials looked normally.

"They (father -in -law) said that they didn’t want it. Her husband asked the doctor and said it was difficult to treat. I didn’t have any way. I could only watch him starve to death in the thermometer …"

After this time, Shi Yan has been in a frustrated mood and has mild depression to receive several psychological counseling.

The birth defect is a problem that many people do not want to face, but have to face.

my country is a high-incidence of birth defects. Every year, 800-12 million birth defects are born. In other words, an average of one birth defect is born every 30 seconds!The number of birth defects in my country accounted for about 20%of the world.

According to the statistics of the "China Birth Deficiency Prevention Report (2012)", the incidence of defects in my country is currently about 5.6%, and about 900,000 newly born defects are added each year. Essence

According to the annual birth defect rate of 5.6%, the total number of birth defects is expected. In 2018, the national birth population is expected to be 17.44 million, of which the total number of birth defects is 980,000.| Figure:

The top of the ranking is congenital heart disease (new> 130,000 cases), congenital hearing impairment (new 35,000-40,000 cases per year), and Tang syndrome (newly added> 23,000 cases), 23,000 cases),Lip cracks and cleft palate (new 23,000 cases are added each year), neural tube defects (new <10,000 cases), congenital thyroid dysfunction (8,000 cases per year), phenylite urine (1200-1500 are added per year a yearexample).

Most birth defects occur in the first three months of pregnancy.The picture shows the ultrasonic examination of the 12th week of pregnancy.| Figure:

The defect of birth is not a single disease, but an abnormal body structure, function or metabolic abnormalities that occur before the baby is born.Birth defects usually include structural malformations, abnormal chromosomes, genetic metabolic diseases and abnormal function.The birth defect is the main cause of early abortion, death, siege, death of infant death, and congenital disability.

Japan: Choose to die, no one blame her cruelty

Wamaki lived in Osaka, Japan. When he checked abnormalities at the 18 -week pregnancy of last year, he found that the fetal membrane parts were missing, which was a congenital heart defect.

For this sudden bad news, He Zi looked at a loss.

She first informed her husband who was on a business trip in Tokyo, and then informed the mother of Kobe.The next day, her husband rushed back by Shinkansen, and her mother, father and brother also drove over from Osaka. The mother -in -law and aunt who lived nearby came over.The family was crowded in the living room of the small commercial house, discussed the child’s name, the results of the hospital diagnosis, the doctor’s suggestion, and discussed the child to "leave" to worship which temple to be worshiped.

Three days later, accompanied by his family, He Zi went to the clinic to induce labor to lose this "defect" child.

In Japan, "defective babies" are inclusive.

In 1940, Japan’s "National Equipment Law" recognized for the first time to block the birth of infants. Children who believed that defective were the burden of family and society, and also the misfortune of their children.The reproductive function of the child.

The change in 1948 stipulates that "those who have genetic diseases or genetic malformations in 1948 can artificially block the birth of infants."The "Mother Protection Law" formulated in 1996 eliminated the "fetal bar item". Now it is not allowed to abort because the parents have genetic diseases, but Article 14 of the law allows it to suspend pregnancy due to economic reasons (must not exceed 22 22Zhou), when the fetus is defective, you can stop your pregnancy with expensive raising fees.

"Preparatory Diagnosis" has become the main means to judge or suspend pregnancy. Japan’s survey data shows that the number of artificial abortion performed due to abnormal fetal abnormalities in the late 2000 increases more than 10 years ago.In the "New Diagnosis", it is judged to be a pregnant woman who is abnormal in chromosomes, choosing an artificial abortion to block 97%of the baby’s birth.

Before pregnancy, a healthy lifestyle and good physical condition will greatly reduce the chance of fetal birth defects.| Figure:

Most of the prospective mothers in Japan think that the existence of defects will not only bring a huge economic burden on the families, but also make the relationship between couples move towards a deadlock.

To treat defects and let it live or die, there are still different voices in Japan.Some people think that with the development of the medical level, even if there are defects, you can also use surgery for rescue treatment. You should cherish every life that comes to the world.

He Zi is pregnant again this year, and everything is normal for the current checkup.But the last time she ended her pregnancy, which made her and her husband feel deeply regrettable. To this end, Hedu’s husband gave up his promotion application to stay as Osaka and take care of his pregnant wife.

United States: Choose to give birth, even parents have no right to deprive

The 30 -year -old surrogate mother of the United States, Christopher Kelly, during the surrogate process, the doctor found that the fetus had lip, cleft palate, brain cysts, and heart malformations during the surrogate process.The couple who was pregnant with Kelly had a face -to -face conversation with her. They said that they didn’t want their children to come to this world just for the sake of suffering, and hoped to terminate pregnancy.But Kelly said that she was unwilling to terminate her pregnancy, unless the fetus itself could not survive, or she would die soon after giving birth.

When the parents in the abdomen asked Kelly to terminate their pregnancy, she still decided to give birth to this physiological defective child.For this decision, she went to Michigan to produce thousands of miles away.Because of the laws of Michigan, the fate of the baby is determined by the surrogate mother.

According to US media reports, Kelly eventually gave birth to the child and gave her to a pair of parents with experience in raising disabled children through legal channels.

In the United States, for special children, even parents have no right to deprive them of their right to life.

In the United States, defective children and disabled children are called "special children". If a child is diagnosed as a special child, all the treatment costs are paid by the government, and they are complete in subsequent education, treatment, and social welfare guarantees.The system supports that the law of the United States implements and guarantees special education through legislation. The annual financial investment also reflects the distribution of special education.

Researchers have found that birth defects or congenital malformations accounted for 31%of infants in the United States.| Figure:

In the United States, special children in daily life can go to school, employment, marriage and children like ordinary people.

Parents of special children can also participate in some mutual aid activities, support each other, and help each other, which is very conducive to the development of parent -child relationships.At the same time, the system services from the United States from diagnosis to treatment are very complete, which has a great impact on the burden of family and parent -child relationships.

The help of the United States for special children is not just moral and public opinion concepts, but from the level of society and legislation, they really do "do not abandon or give up."

Defacious treatment, not only facing moral issues

For defects, the most direct reason for choosing to give up is nothing more than economic reasons.

And this economic burden is not only an impact on families of defective children, but also have an impact on the medical system, society and the country.The birth rate of "defective babies" is too high, which will inevitably have a negative impact on the economic development of a country and the quality of the population.

The defect of birth not only seriously endangers the quality of children’s survival and life, affects family happiness and harmony, but also cause huge potential life losses and socioeconomic burdens.In order to reduce the occurrence of birth defects, the World Health Organization proposed the "three -level prevention" strategy of birth defects.

Three -level prevention

First -level prevention -consultation and examination before pregnancy.The key time to prevent defects of birth defects is particularly important to strengthen marriage examinations, pre -pregnancy genetic consultation, and pathogenic microorganisms before pregnancy.

Two -level prevention -prenatal inspection.There are more than 5 delivery checks throughout pregnancy. Through the birth check, high -risk pregnant women can be screened, diagnosed and treated in a timely manner to reduce the birth of children.

Three -level prevention -newborn disease screening.Careful physical examination of newborn and screening for certain diseases can be performed. Through these methods, they can detect defectives and perform treatment as soon as possible to improve their prognosis as soon as possible.

Regarding the prevention and control of birth defects, our country introduced the "Maternal and Child Health Law of the People’s Republic of China" and its supporting regulations and specifications in the 1990s.The social security system for birth defects was promoted in 2010 through the proposal of prevention and control of birth defects. In 2012, it officially released the "Birth Deficiency Prevention Report".

Studies have shown that the intake of diversified nutrients (vitamin A, vitamin B1, vitamin B2, vitamin C, calcium, etc.) in my country during pregnancy during pregnancy is significantly lower than the recommendation value. The lack of sufficient nutrients in the early days of pregnant women is that the fetus has a variety of birth tube deformities. One of the causes of defects.| Figure:

In addition, my country has formulated and implemented a series of technical standards and specifications in the production defect prevention and control system, and implemented a series of free national major birth defect prevention and control projects, and free pre -pregnancy health inspection projects.

From legislation to various medical policies, the state has made significant improvements in the prevention and control of defects in my country through a series of measures.

Compared with 2000 in 2014, the death rate of infant mortality caused by defects in my country was reduced from 4 ‰ to 2.1 ‰.Severe or common such as neural tube defects and cleft lip and palate incidence continued to decline. Compared with 2000 in 2015 and 2000, neural tube defects fell by 80%, and cleft lip and palate fell by 47%.

The diagnosis of popularization of defects through financial support is an effective means to block the birth of "defective babies".Through prenatal diagnosis, you can diagnose that the fetus is a healthy person, a carrier, or a defective patient. If it is a severe defect fetus, you can choose to terminate the pregnancy and block the birth.

At present, with the opening of the second child, the number of birth population has increased, the proportion of elderly women has continued to increase, and various factors such as environmental pollution have increased the risk of birth defects, resulting in the increase in total defects.Establishment.The situation of defects in the new situation is severe, urgently strengthened prevention and control, improves technical specifications, improves technical level and service capabilities, and meets the new requirements of new situation defect prevention and control in the new situation.

Conclusion: This year, the theme of "China Prevention and Defective Day" is "preventing and controlling birth defects and helping health poverty alleviation."Because of the heavy social burden brought by "defect babies", it can actually be avoided by preventing early prevention, or at least a significant reduction.Newborns of birth defects are more of the meaning of human life for our meaning.Don’t give up the defects that can be treated easily. Any disrespect for life is immoral.

(According to the requirements of the interviewees, Shi Yan and Hezi are all pseudonyms in the text)

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