Mother-in-law said I hurt a family of three generations: a hepatitis B mother's two births

Dingxiang Garden

Infected

The liver is a "silent" organ, and liver tissue without sensory endings cannot report its pain. In most cases, hepatitis B does not rapidly attack.The virus lingers in people for a decade or two, and if not told, the infected person won't even realize they have hepatitis B.

Gu Xia was diagnosed at the age of 14.

In the late summer of 1999, Gu's brother's school conducted a large-scale screening for hepatitis B infection. After the results came out, the school called, the other tone solemn, informed his brother infected with hepatitis B virus, and suggested that the whole family "go to screening again."

Also diagnosed were two small children from the next village. Three families packed a car to the CDC in the county, and the results came out that night -Gu Xia and the mother of another child were confirmed to have hepatitis B virus.

"How did you get it? "This is the hepatitis B virus infected people will be aware of the results after the repeated exploration of a problem. Gu Xia is no exception.

There are two things she can relate to.

At the age of seven, Gu fell ill with yellow skin, yellow urine, fever, weakness and an aversion to oil - considered a sign of liver disease locally. In the early 1990s, few people in Gu Xia's village would go to the city to seek medical treatment. "Children, whether they have hepatitis or smallpox, are looking for barefoot doctors, folk remedies and home treatment. ”

Grandpa punted across the river, took Gu Xia to find a local old man, more than sixty years old, dark and rough skin, not much. Farming is his main business, the local spread, the old family spread for generations to cure liver disease folk prescription.

The other eyelid lift, looked at the girl's face, "liver disease is right," gave her "a lump of black medicine mud," home rub into broad beans big pills, two pills a day.

"Now that I think about it, some of the acute symptoms may have disappeared, but I didn't go to the hospital for a check-up. Hepatitis may have been there ever since. ”

There are also risks from sharing needles.

Gu Xia, who has been in poor health since childhood, is a frequent visitor to the doctor's home. There was an aluminum lunch box on the doctor's desk, with an alcohol lamp under it, and a limited number of needles sunk into the bottom of the box.

"When I have a cold, go for an injection. When you're done, pull the needle off and put it back in the lunch box. When it's hot, it's sterilized. Change one of several needles from inside to the child behind, then change another. ”

But for Gu Xia, the "iatrogenic infection virus" speculation is not the most frightening. What is frightening is that "you may become the source of infection." She has a secret and deep guilt that she "may have caused her brother and other children to contract hepatitis B."

The introspection or condemnation of morality caused by the virus is not unique to Gu. Hepatitis B infection is considered to be the fault of the infected person, just as alcoholics are prone to esophageal cancer and smokers to lung cancer.People speculated that hepatitis B patients must have "done something unhealthy" to "attract such punishment."

A "post-80s" girl once mentioned that after being told by her school that she was infected with hepatitis B virus, her parents' first reaction was to accuse her of "eating out."This misperception still exists today.

Although the WHO document states: "Hepatitis B virus is not transmitted by sharing utensils or cooking utensils with an infected person, breastfeeding, hugging, kissing, coughing or sneezing by an infected mother. ”

Yet for hepatitis B, the rumors never stop.

From the early years, when laws and regulations imposed an unwarranted occupational ban on hepatitis B carriers, to the public's fantasies about pollution caused by the term, HBV carriers have to carefully hide their identity.Accordingly, they are deprived of many choices by life.

At the age of 15, Gu Xia graduated from junior high school did not continue to study, she wanted to work in a factory, relatives opened the food factory, medical examination was brushed down. "How many paths can a man like me, who hasn't studied much, choose? Either into the factory, or catering, but both tragedy. ”

Gu Xia eventually entered the beauty salon industry, "is the lowest threshold of admission." She started with the front cashier, trying to avoid direct contact with customers.

Before 2018, she worked outside, as far as possible choose to live alone, "can not give others trouble."

Birth

"Can it be cured? ”

"There is no cure for this disease. The cure is spending money for nothing. No amount of money can be spent on it. We can't get rid of the root. ”

In the four years since her diagnosis, Gu Xia has not given up, and the above conversations have occurred many times between her doctors and her.

The family does not give up, asking around may be "completely cured" of the folk prescription.

The first prescription left a lasting mark on Gu Xia and his brother. Uncle pulled a few herbs from the ridge of the field, mashed them, soaked them with soju and applied them to the wrists of the siblings. "Men left and women right, apply morning and night, flow pus water, disease is fine. ”

The siblings did not make it through the night, suffering burns, blistering, yellow water on their wrists and "rolling around in bed in pain."

Twenty years later, Gu Xia still has scars on the inside of her wrist from that year's injury."Reach out, people ask, I said when I was a child hot. ”

Gu Xia's wrist is white after the scab wound

Having suffered, Gu Xia did not stop there. She has tasted bitter soup and swallowed meatballs made of pig bile and flour. The inspection data given by the hospital is not always what she wants, "or big Sanyang."

Unable to get the desired result, Gu gave up completely, did not go to the hospital, no longer treated, pretending to go back to before the diagnosis - when she had not lost her "normal" status. For her, it was "a way to survive."

But there was one problem she could never get around - marriage and childbirth.

When she was 20 years old, Gu Xia and her partner of two years were about to enter a marriage. She confessed to each other. After consulting with her parents, her boyfriend sent her a reply:

"Our family would rather have an ugly daughter-in-law than an unhealthy one."

"I was particularly hurt by his attitude and at that time I had thought about it for a long time and thought it (the confession) was wrong and should have kept it from me. ”

Three years later, Gu Xia with a secret into the first marriage, the other side did not mention the pre-marital examination, she also avoided.

In 2009, she and her husband "drift north" to work together, pregnant.

The secret is still not well hidden. When she was six months pregnant, her husband suffered motion sickness and vomiting on his way to work. The doctor diagnosed acute hepatitis B virus infection and asked her family to check it out.

"I can't hide it. In front of his family, the doctor took my results and said, "You're obviously not infected right now." ”

When the husband and his family knew, their faces changed. Originally in and out will accompany her mother-in-law, since then never asked Gu Xia's body.

Doctors advised her to undergo "mother-to-child blocking," the first time Gu had heard of the term.

"At that time, I was looking for the director of a hospital in Beijing, because there was no file in the hospital, Is the field again, the doctor does not receive, also does not give cure, gave a suggestion, 'pregnant 7, 8, 9 three months continuously play hepatitis B immunoglobulin'. "The blocking rate is about 98 percent," the doctor told Gu.

Zhang Qingying, chief physician of the Department of Obstetrics and Gynecology Hospital of Fudan University in Shanghai, has 30 years of clinical experience. In her memory, "Mothers with hepatitis B virus use hepatitis b immunoglobulin in the third trimester of pregnancy" has been vigorously promoted.

But "in recent years, more clinical studies have not proved that it can improve the rate of maternal and infant blocking," "it simply can not play a blocking role, no inhibition of the virus, no protective effect on children. Then I didn't have to. ”

All that has happened since has confirmed this statement. But for Gu at the time, it was a lifeline, carrying a 50% chance. So long as the children are healthy, I shall have something to say about the family, and my marriage shall be preserved. ”

She returned to Anhui and begged doctors at the county's maternal and child health care hospital to inject herself with hepatitis B immunoglobulin.

A few months later, the child was born in a private hospital.Medical staff treat Gu Xia, there is no "this is a chronic hepatitis B maternal" such awareness, still according to the routine operation.

Gu Xia's son was born less than 12 hours after being vaccinated against hepatitis B and hepatitis b immunoglobulin. The former had been added to the national category one vaccine in 2005, which is free of charge and compulsory for all newborns. And if the mother carries the hepatitis B virus, the child must also add a dose of hepatitis b immunoglobulin.

There was a ten-month interval between the birth of the child and confirmation of the infection. Every day Gu Xia lives in a struggle. "I am a contradiction. I want to explore what this disease can do." But scared and didn't want to know. I feel that if I hadn't been checked out, my life would have been different, and it wouldn't be as miserable as it is now, "

"Naturally I hope he is healthy, and I don't want him to taste it again for my sins. I am afraid to know if he has hepatitis B, but I have to be responsible for him. ”

Hospital examination results shattered all her expectations, her son is "small three yang." (Note: The success rate of blocking between mother and baby is mainly related to the timeliness of newborn vaccine injection and maternal viral load. The blocking rate of vaccine + immunoglobulin is about 96%. ）

When the child was born, her mother forbade Gu Xia from being close to her son. She did not allow lactation and separated dishes and chopsticks. Gu Xia held her son teasing for a while, her mother-in-law came forward to take the child away. "All her actions are saying, 'You're sick, you stay away from the kids, stay away" from us.

After the results of his son's tests, "behavior" became "language."

"She used to shout, 'You have destroyed three generations of our family'. ”

Husband to talk to Gu Xia: "You are sick, The child is also sick, I treat the child to a large amount of money, in case one day you also need such a large sum of money. We are husband and wife, from the moral point of view I should treat you, but I can't afford it. ”

I knew then that if we weren't married you could leave me alone. ”

After that conversation, Gu Xia's marriage ended.

"I explained that the doctor said it was an extinct volcano and that all it needed was to push it down with medicine. How do you know I must need a large sum of money for treatment? But I don't believe you, and I think that's a quibble. ”

Anxiety about the risk of mother-to-child transmission surrounds almost every "expectant mother with hepatitis B." A Sichuan mother will take her child to have a check-up next week. She hasn't slept well for a long time. "If the check-up comes out bad, I can't talk to my husband and mother-in-law. ”

Such feelings of guilt and anxiety permeate Zhang Qingying's clinic. "The baby lives in the mother's womb for ten months," and therefore, people are more strict on women. Also carrying hepatitis B virus, in fertility, compared to women, men show a lot less trouble.

to block

Eight years ago, Zhang Qingying met a woman who was 26 weeks pregnant with cirrhosis. Her hepatitis B virus came from her mother. "In our capacity at the time, this pregnant woman risked her life by continuing her pregnancy. But this mother is very insistent, she said, 'I want this baby if I die'.

The hospital formed a team, doctors in the hepatology department and doctors in obstetrics and gynecology, "Even to the degree of cirrhosis, patients can rely on their own physical ability to get pregnant, indicating that the liver is not bad to that extent, or a glimmer of hope."

For the process of treatment, Zhang Qingying said very simple, "while walking to see," "according to her virus number to judge, see if you need to use antiviral drug treatment, how to use; After the child is born must vaccinate hepatitis B vaccine and hepatitis b immunoglobulin, this is the most important.The mother gave birth at 38 weeks and survived, with her hepatitis B virus completely blocked.

The plan, which is now very mature, was a big challenge for Zhang and her colleagues eight years ago. "At that time, I did not know how much effect there would be, and what effect it would achieve. It was slowly groping, until now it has become a guide and a consensus. Just like new crown pneumonia, the treatment process is constantly trying to find the least risk and the most effective. ”

It was under the guidance of such a plan that Gu Xia gave birth to a healthy daughter. At this point, it had been eight years since she gave birth to her first child.

Before entering her second marriage, she was completely honest about her situation. Her husband accepted her condition, consulted a doctor, was vaccinated against hepatitis B and has not been infected.

On the issue of having children, Gu Xia made a request, "Beijing's medical conditions are good, I want to give birth in Beijing. ”

She has pregnancy tests every half a month, and her mood fluctuates with the rise and fall of her hepatitis B number. "The virus count was once very high, always to the eighth power," the doctor prescribed antiviral drugs, dropped to the sixth power, the next month to the third power, and has remained there ever since.

To reduce intrauterine infection, Gu was asked to replace amniocentesis with a noninvasive prenatal test, which could obtain a "relatively accurate answer" from peripheral venous blood.

After childbirth, the midwife will immediately take the child away, quickly leave the environment contaminated by maternal blood, completely remove the child's body blood, mucus and amniotic fluid, wipe the surface of the umbilical cord will cut it.

These are not the conditions for the birth of a first child, from the pregnancy to the confirmation of her daughter's health, Gu Xia kept thinking of the first birth.

"It would have been nice to have done the same back then. "That thought popped into her head a thousand times.

After his son was diagnosed with "Little Sanyang," doctors in Beijing advised parents to cooperate with treatment with their children. "If they are not well treated in childhood, they will develop into chronic virus carriers in adulthood. ”

But the treatment was stopped after a few years by her former husband, who took the children back to his hometown in Anhui."Big expenses are the main reason, nearly one hundred thousand dollars a year. "The child is also in pain, and the interferon makes his mood bad," even banging his head against a wall. "

More important, is the vision of the people around. "Neighbors know you've gone to the doctor, and parents will tell their children not to play with him."Her ex-husband always felt that "this stigma is not brought by the disease itself, but because of the treatment."

No one spoke to his son about what had happened to him, and the boy, who had become increasingly silent, seemed accustomed to being taken in for regular checkups.

Gu Xia can only be silent, she can't even imagine, sit down and talk with her son. "'Son, it was mother who gave you the virus,' is it? It's hard just to open your mouth. ”

Let him see it first. Me too. ”

Tens of millions of "silent"

Li Bei, 27, showed something possible about the future of Gu Xia's son.

It was only after her birth that the mother was informed that both mother and daughter had contracted hepatitis B. As a minor, she shuttled regularly with her mother between the city's infectious disease hospital and home, but her mother alone remained in the doctor's office following orders.

It wasn't until the college entrance examination that she learned she was a hepatitis B virus carrier.

"Do you blame your mother? ”

"No. She's also a victim, and she doesn't want to. ”

But Libe still felt trapped. She wants to go into a love, want a marriage, but afraid to see each other's eyes mind.

Her mother advised her to hide it. "I can't. This lie must be followed by a series of lies."

It's something medicine can't solve.

In Zhang Qingying's consulting room, someone wants the doctor to erase the history of hepatitis B on the sick leave; There are husbands who wish to keep secret, not to his wife that he is infected with hepatitis B virus, and some people with her husband and doctors to play a good discussion, hidden parents-in-law.

These go far beyond the job of doctors "saving lives."

For her husband, who wants to help hide his hepatitis B, she also carefully balances privacy and health. "Telling your wife to get the vaccine in advance, telling her to make antibodies in her body, can reduce a lot of unnecessary risks. But more we will not say, do not destroy the family. ”

Zhang Qingying will also tell pregnant women who want to hide their in-laws, she can entrust a person to communicate their own situation, such as her husband, "Other people who are not within the scope of authorization, we have no right to inform, the other side has no rights to know." ”

Doctors understand the concerns of people infected with hepatitis B. The easy and effective HBV surface antigen test has singled them out from the crowd, but no one has been able to eliminate the virus completely.

From day one of diagnosis, fear was born.Public misconceptions about the infectiousness and transmission of hepatitis B place people living with the virus in the awkward position of being marginalized and may be forced to abandon their previous thoughts. Thus, silence also from this time began to become one of the protective colors of the society they live in.

Some of them, "take medicine secretly," cover their "go to infectious disease hospital," guilty to write down a "good" in the company's health condition inquiry, even voice is stressed to conceal identity.Apart from the medicine box and the checklist, everything related to "hepatitis B" was stripped from their lives, consciously or unconsciously.

Gu Xia's brother is 33 years old this year, because of the hepatitis B virus, talked about love, but did not follow, has not married. The originally cheerful and lively boy became silent.

"In our group, sometimes it is the patient to find the patient, I think my brother really can not find a like this. ”

But she dare not mention, "'Hepatitis B' is a taboo in the dialogue between siblings, a mention, brother on the flip. Shout loudly, 'What do you know?' ”

Only once, brother with her proposed, want to take nephew from her sister's ex-husband side, "The child is too poor, I come to keep good. ”