When people living with HIV decide to get married and have children
Three days ago, 42-year-old Liang Yue welcomed her first child. Because of HIV infection, she claimed that her "life progress bar" was 10 years slower than her friends, and even though she learned to live with the disease, she never had the courage and confidence to enter into marriage for a long time. This year, after nearly 10 years of acquaintance with her boyfriend, who is also infected, she made up her mind to get married, get pregnant and have children, and started a new life.
In real life, people living with HIV generally marry later and have children later, does this mean that for them, entering into intimate relationships, entering marriage, and even having children is a more difficult road than ordinary people?
December 12 is World AIDS Day. On November 1, Guangdong passed the national assessment and became one of the first provinces to eliminate mother-to-child transmission of HIV, syphilis and hepatitis B. Li Linghua, director of the Infectious Disease Center of the Eighth Affiliated Hospital of Guangzhou Medical University (hereinafter referred to as the "Eighth Affiliated Hospital of Guangzhou"), said in an interview that now that the "mother-to-child blocking" technology of AIDS has matured, it is no longer a problem for people living with HIV to give birth to a healthy child, but they do have to go through more hardships in the process of raising children. Avoiding the transmission of the virus to the next generation is the love of parents for their children, and the responsibility of one life to another.
●Nanfang Daily reporter Huang Jinhui, intern Wang Ennuo, correspondent Liu Qisha
Be a "matchmaker" for the infected
After being infected with HIV, almost everyone experiences the darkest hour.
"Post-80s" Liang Yue, a native of Guangxi, was diagnosed with HIV in 2011 because of her relationship with her ex-boyfriend who had a history of drug abuse. For her, having "this disease" is like a "drowning" life, and she can concretely perceive the speed of "life falling", and Liang Yue tries to avoid mentioning the word "AIDS".
At the Guangzhou Eighth Hospital, Liang Yue received formal antiviral treatment, and within two years her viral load was well controlled, in her words, she felt "ashore". Even though her life was unharmed, she still hid the secret of the infection in her heart and did not dare to tell the people around her, including her parents. At the age of 30, she encountered a marriage urging from her family.
"I don't even want to get married right now." She replied indifferently.
In fact, Liang Yue is eager for marriage, and there is no shortage of suitors around her. In order to meet her emotional needs, she tried to socialize with ordinary people, but always maintained a reasonable distance, did not dare to have intimate behavior, "for fear of hurting others", and when it came to marriage problems, she prevaricated the other party: "I can't have children, think clearly and marry me again." ”
Liang Yue used the lie of not being able to have children to cover up the fact of being infected with AIDS, because she thought that no normal man would accept her "disease", let alone want the other party to know her "weakness", and she couldn't afford the price of "saying it to the outside world after breaking up".
Time equality passed through everyone's body, and slowly Liang Yue felt deeper loneliness, especially when the people around her gradually had their own families, and the idea of "stability" became stronger.
In 2014, Liang Yue decided to find a person who "sympathizes with the disease". Under the introduction of Du Mei, a volunteer of the Guangzhou Red Ribbon Association, she met her husband, who is also living with HIV, and after nearly 10 years of acquaintance, she finally started a family.
Liang Yue thought that if she found a healthy man, she would have to bear more pressure, "no one cares at all, unless it is the same as herself." Now, couples know each other best about the secrets of the disease.
In 2007, Du Mei became a volunteer at the Guangzhou Red Ribbon Association, where her main work was to care for the infected. She has been working with people living with HIV for a long time, and she often receives requests from people who are living with HIV to help introduce their other half. In the past 10 years, Du Mei has successfully brokered more than 10 couples, of which more than 5 have registered their marriages, some of which are "single-yang" families (i.e., one party is infected and one is normal), and some are "double-yang" families (both parties are infected).
As a "matchmaker" for people living with HIV, Du Mei retains a sense of dignity and never attends wedding receptions, some of which are coincidental, and more often, Du Mei admits that because of the embarrassment of his identity, many infected people hide their disease history from relatives and friends, "How to introduce me to guests is another problem." So, there's no need to add annoyance to newcomers.
Honesty is the foundation of starting a family
At first, when she was a "matchmaker", Du Mei thought that infected people could only find the same people, but after being in this industry for a long time, she gradually understood that people should not set their own limits, and should encourage infected people: "As long as you are good enough, you can find the other half of your heart." ”
Kobayashi is a university teacher who was diagnosed with HIV in 2011, and in 2018 he met a woman through a friend's introduction, and after spending some time together, he decided to tell the truth.
When an infected person is looking for a healthy partner, how to communicate the medical history is a real problem. Du Mei believes that some non-contagious infected people do not necessarily have to tell each other about their disease history as soon as they fall in love with ordinary people, but they must not have sex, and wait until they need to enter a new stage of life to tell each other about the situation.
Before being informed, Kobayashi was mentally prepared to be rejected. The cold treatment was expected, and after two weeks of cooling their relationship, they got back together. During the marriage examination, the other party also received a reminder from the hospital, which did not prevent them from registering their marriage, and now they have a healthy baby who is nearly 2 years old.
In this relationship, Kobayashi is full of gratitude to his wife, "thanking her for accepting the imperfections in herself."
As a case manager at the "one-stop" AIDS diagnosis and treatment center of Guangzhou Eighth Hospital, Lin Luobing believes that once you decide to start a family with a person and raise children, you should be honest with each other and inform the other person of the disease history as soon as possible. In the four years since she started her career, she has instructed people living with HIV on how to tell their intimate partners about their medical history.
Lin Luobing said that according to the Infectious Disease Law, spouses have the right to know, and if they conceal it and fail to report it, it is an illegal act; If you say it in one step, "When you hear the word 'AIDS,' most people will be scared away." Lin Luobing also told them: You can first mention that you have a disease and need to take medicine for life, and test the other party's acceptance, but in the end, you can't hide anything.
When it comes to managing an intimate relationship with someone living with HIV, sometimes a little "assist" is needed. Du Mei took the initiative to take the job: "If you find a partner you like, when you tell you, you can bring it here and let me tell him (her)." ”
"The person who can come this far has a very deep relationship, which shows that he (she) is willing to tolerate everything in the other party." Dume said.
Not long ago, an "AIDS mother" had a great adverse reaction after taking free drugs provided by the state. After clarifying the reason, the doctor suggested that she might have to pay some money for a different plan, but in order to save money on medical expenses, she said she insisted on taking the free medicine. Later, the husband, who was not infected with the disease, did not want his wife to suffer, and was willing to spend 2000,<> yuan to buy her medicine.
"(2000,2 yuan) is not much for people with a monthly income of <>,<> yuan, but it is a lot of money for their family." He Haolan, director of the third district of the infectious disease department of Guangzhou Eighth Hospital, was very moved by this.
Is the "single-yang family" more unstable? Kobayashi believes that illness is an unavoidable point in the relationship between the two, and everyone has a tacit understanding to avoid talking about it, and as the time to form a family becomes longer, the two sides will face more challenges, such as the contradiction between the support of the elderly and the raising of children, and the financial crisis, which may disintegrate a family.
Choose to believe in medicine and believe in each other
Whether it is a "single-yang" family or a "double-yang" family, the outside world still has doubts about whether they can give birth to a healthy baby, but in fact, with the increasing maturity of AIDS mother-to-child blocking technology, giving birth to a healthy child is "not a question of whether it is okay or not, but more of a question of whether you want to do it." Data show that since 1999, the Eighth Hospital of Guangzhou has received more than 500 cases of "AIDS mothers", and none of them have failed to "mother-to-child blocking".
Liang Yue didn't think about having children at first, "For this disease, childbirth itself carries greater risks. But after the relationship between the two stabilized, she changed her mind: "How can you do without children?" Her husband disagreed, believing that even if the two of them took blocking drugs for many years, there was still no guarantee that they would have a healthy child.
Although artificial insemination is a mature assisted reproductive technology, there is currently no medical reproductive center in China that can provide assisted reproductive services for patients infected with AIDS. Therefore, at present, if AIDS families want to have the next generation, they still have to choose the natural way of conception. For single-yang families, they have more concerns – both to have a healthy baby and to protect another person from infection.
The way to protect a person from infection at this point is to practice pre-exposure prophylaxis. He Haolan introduced that pre-exposure prophylaxis is a very mature system, but after both husband and wife have calculated the ovulation period and had sex, the other party needs to go to the pre-exposure clinic within 72 hours to take blocking drugs. In reality, some infected people who are in the stage of preparing for pregnancy want to prescribe medicine directly, and He Haolan will generally stop it after knowing it, and suggest that she should bring her other half over, because she is worried that the other party does not know anything about her partner's medical history.
He Haolan said that when a person decides to have a child, in a certain sense, it means that he (she) is satisfied with the results of the current antiviral treatment, and has regained confidence and enthusiasm for life, so he or she wants to have the next generation.
Under Liang Yue's soft grinding and hard bubbles, her husband finally agreed to her request and considered having a child. At first, the two did not conceive smoothly naturally, they were very anxious, and they had a miscarriage, so she cherished the "gift from heaven" this time.
During pregnancy, you need to take antiviral medications consistently, and your doctor will keep track of her CD4 cell count and viral load. The latter is the clearest indicator of immune system compromise in people living with HIV. If an increase in viral load and a decrease in the number of CD4 cells are detected, the gynaecologist will work with the infectious disease department to adjust the medication regimen for the pregnant woman. Some people who take the drug during pregnancy will experience greater gastrointestinal adverse effects.
Liang Yue didn't feel any discomfort. After three months of pregnancy, she registered her marriage with her husband, "When I have a child and then get a certificate, I can better keep the secret of the two, and I will not be able to have children by rumors." Liang Yue said.
"18 months is a significant watershed"
Mother-to-child transmission of HIV can occur during pregnancy, childbirth, and lactation: intrauterine transmission, laboral transmission, and postpartum transmission. Therefore, if "AIDS mothers" want to give birth to healthy children, they need to pass through three "barriers".
Ho said that if the mother has a low viral load, she can actually choose to give birth vaginally, but the chance of the child being infected will also increase. Therefore, at about 38 weeks of pregnancy, women and their families often choose cesarean section. After birth, the baby is sent to the paediatric intensive care unit, where the health care provider begins prophylactic medication at the time of artificial feeding. Generally speaking, the baby can be discharged with the mother after a week of observation in the hospital.
Families with HIV tend to be more cautious when raising a child.
On the phone, He Haolan will encounter a similar problem: If you accidentally hurt your finger while peeling an apple for a child, will the child eat it? Should I wear gloves when bathing my child? Can children sleep with their parents? Once, a patient also hung up in the emergency room to ask the doctor if the child used his own water cup to drink water, would he be infected with the virus? Some people dare not hug or kiss their children, so they specially invited a sister-in-law to take care of the children.
In response to these things, He Haolan will relieve their anxiety in time. As the child grows up, she keeps reminding: artificial feeding; The toothbrush must be placed at the highest point to avoid children from touching it, "if the child accidentally touches it, it may cause infection if it is placed in the mouth"; Always have a band-aid at home, and once a rash and wound appears, bandage it first to avoid blood dripping on your child's belongings...
Probably because of the understanding of the transmission route of the disease, in the process of raising children, Xiao Lin did not have some "dramatic" experiences, but once when making complementary food for the child, he accidentally cut his finger, and after bandaging the wound in time, he made a new complementary food and fed it to the child.
"Eighteen months is a significant watershed." Du Peishan, a case manager of the Department of Infectious Diseases of Guangzhou Eighth Hospital, said that from the birth of the baby to 18 months ago, the doctor will always monitor the antibodies in his body, before the parents raised the child, the mood fluctuated very much, "often relieved for two days, after two days and frightened", and so on to 18 and a half years old, the child's last antibody test was negative, the parents are really at ease, because often at this time, parents have also learned to live safely with their children.
He Haolan noticed that once they made sure that their children were okay, many parents would pull their children out of the environment, not only would they not bring their children to the outpatient clinic, but they would also not take the initiative to share their children's growth environment.
"Put it out of sight first"
For people living with HIV, they rarely confess when their children are minors, after all, it is a story that they do not know where to start, and they are afraid that children will not be able to tell the public. But sometimes parents still underestimate the intelligence of their children, living under the same roof, maybe they have long known the "secrets" of their elders.
Sister Hong, an infected person from Yuncheng District, Yunfu City, was tested for HIV when her son was four years old. When her daughter reached puberty, she decided to confess all this to her daughter, who was not infected, and she imagined her daughter's reaction in advance, but her daughter said indifferently, "I already knew." What touched her even more was that in order not to make her brother feel discriminated against, she also took the initiative to help take her younger brother and even slept with her younger brother.
Sometimes, telling your child the truth is also a way to relieve stress. Du Mei once met a single mother, her child grew up to be more rebellious, because of this disease, she suffered a lot of pressure, every time she saw Du Mei, she burst into tears. Du Mei suggested that she take the initiative to tell the child about the situation so that she could have more to rely on. She hadn't been here since that time, and Du Mei guessed that "she should have told her son the truth."
In fact, some older infected people have a harder time confessing to their children. In the first half of their lives, they were the elders of high family status. After infection, they have a strong sense of stigma and feel that they "can't pull their feet".
Last year, Ms. To managed a 79-year-old man who was a former teacher who was distressed after being diagnosed with AIDS. Because of his poor health and unsteady walking, Du Peishan suggested that he let the child accompany him to the follow-up consultation, but the old man did not know how to tell the child. At this time, Du Peishan suggested that the old man give her the child's phone number, and after obtaining the old man's consent, she would tell his child the stakes. Later, the old man took his son to the hospital. In front of Du Peishan, the father and son were frank with each other. The old man let go of his psychological baggage a little.
On November 11, the eve of World AIDS Day, Liang Yue gave birth to the next boy by caesarean section. As for the secrets of the husband and wife, Liang Yue did not plan to hide the child, and when he grew up, he had to confess to the child - you grew up in an AIDS family, you should learn to protect yourself, "don't follow the old path of your parents".
Xiao Lin didn't plan to hide it all the time, and when he was not well, he would tell the child in person. Now, the ignorant child still treats his pill box as a toy. "The child likes this medicine box very much, and if he doesn't give it, he will cry", and every time she sees this scene, her wife will say, "You should put it where he can't see it first."
(Liang Yue and Xiaolin are pseudonyms in the article)