[ On this page:
What is HIV? |
What Does "HIV Positive" Mean? |
How Do I Know If My Child Is Infected? |
How Could My Child, Youth, Parent Or Friend Have Become Infected? |
What Is AIDS? How Is It Different From HIV? |
My Child And Others |
HIV And Your Family |
What Do Kids Think? |
HIV Treatment In Pregnancy ]
What is HIV?
HIV stands for Human Immunodeficiency Virus. Viruses are germs that can only survive by entering living cells. Most viruses are destroyed by the body's immune system. HIV, which is different from other viruses, actually enters some of the cells in the immune system, called T4, CD4 or helper cells.
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Sometimes the virus hides in the T4 cells of the immune system for a long time, and during this period a person may be quite well. However, eventually it begins to damage the T4 cells and may also spread to other cells. At that point, the person may become sick with infections that a healthy immune system would usually fight off.
As far as we know now, a person remains infected with HIV for life and, under certain conditions, can pass this virus on to other people. But just having HIV does not mean being sick.
Having HIV usually leads to having AIDS. But having HIV is not the same as having AIDS.
What Does "HIV Positive" Mean?
The term "HIV positive" is used to describe someone who has become infected and whose blood has antibodies or markers for HIV. These antibodies are made by the immune system. The immune system is the part of your body that fights bacteria and viruses. Antibodies working in the immune system can often protect the body from having a virus or disease again.
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For example, if you get infected by measles or mumps, antibodies that are made while you are sick remain in the body and prevent the disease from developing again. Sometimes, through the use of vaccines, we expose ourselves to a small dose of a virus in order to build antibodies and to prevent ourselves from ever getting that illness. These small doses, or vaccinations, are very common today for diseases such as polio or tetanus.
HIV, however, is very unusual in that it hides in T4 cells. That means that even though the body makes antibodies to fight HIV, the antibodies cannot find and kill the virus. Therefore, having antibodies for HIV does not protect a person from the disease. That is also why right now there is no such thing as an immunization shot or vaccine for HIV.
How Do I Know If My Child Is Infected?
When a baby is born to a mother who has HIV, the mother's HIV antibodies will be found in the baby too because they have crossed from the mother to the baby during pregnancy. But this does not necessarily mean that the virus itself has crossed. Most babies who test HIV positive will not actually be infected. The mother's HIV antibodies always disappear as the child gets older and by 18 months after birth are no longer present. At that time, if the baby is actually infected, he or she will be showing his or her own antibodies.
It is now possible to determine if a baby is infected before 18 months. Three blood tests are available that can tell if a child is infected with HIV. These tests look for the virus itself:
A combination of these blood tests and regular medical examinations of the baby make it possible to confidently diagnose HIV infection in babies before their first birthday. This is particularly important so that, if necessary, treatment can be started.
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- HIV culture: This test tries to grow the virus.
- P24 antigen: This test tries to find the virus by looking for its outer covering.
- PCR (Polymerase Chain Reaction): This test looks for bits of DNA (or genetic material) of the virus.
How Could My Child, Youth, Parent Or Friend Have Become Infected?
HIV infection occurs only when the blood, semen, vaginal fluids or breast milk of an HIV infected person is passed to a non-infected person. Transmission can happen in a number of ways:
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- Perinatal or vertical transmission: This means that the virus passed from an infected mother to her baby during pregnancy or during childbirth.
- Breast-feeding: Recent studies suggest that babies sometimes become infected by breast milk. Current Canadian guidelines suggest that HIV positive mothers should not breast-feed their babies.
- Blood to blood contact: Before 1986, some people became infected through blood transfusions or blood products containing HIV. Since then, all blood donations in Canada are tested for HIV and blood products are heat-treated to destroy viruses. But drug users who share needles can pass HIV from one person to another.
- Sharing needles: Sharing needles that have not been professionally sterilized can pass HIV. This includes procedures used in tattooing or the administration of steroids.
- Unprotected sexual intercourse: Anyone infected with HIV can transmit the virus to another person through vaginal and anal intercourse without a condom. The virus in the high risk fluids can get into your blood stream through openings in the mucous membrane of your rectum or vagina. Oral sex, when you come into contact with blood, vaginal fluids or semen, is considered a low risk activity. ("Low risk" means very few people have become infected this way in Canada). You can become infected if you have a break in your skin in or around your mouth. Breaks in the skin can be caused by injuring your gums as you brush or floss your teeth or a tooth that was pulled. In the case of unprotected vaginal, anal and oral intercourse, having a sexually-transmitted disease makes it easier for the virus to get into your bloodstream. Sexually-transmitted diseases usually create openings in your skin that can allow the virus into your blood stream.
What Is AIDS? How Is It Different From HIV?
Even though someone is infected with HIV, it does not necessarily mean he or she has AIDS. AIDS (Acquired Immune Deficiency Syndrome) occurs at a stage in HIV infection when the immune system has been weakened by the HIV. The person is then at risk for many infections or problems. Being diagnosed as having AIDS means you have had one of the infections or problems listed as AIDS-defining conditions. This list was created by doctors and researchers and contains illnesses that people with normal immune systems do not get. These illnesses are called opportunistic infections because they take the opportunity to cause problems when the immune system is too damaged to fight.
Opportunistic infections usually occur after someone has been infected for many years, although everyone with HIV is different. Even after AIDS has developed, both adults and children may have long periods of being well between infections.
Here are some of the infections or problems that can happen to children during the AIDS part of HIV disease:
There are many other illnesses not mentioned here that sometimes occur with HIV and AIDS infection. While many children will experience some of the illnesses listed above, each child's progression is different. Your clinic doctor or nurse can help you understand when and how your child may become sick.
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- Recurrent bacterial infections include ear infections, blood infections, pneumonias and meningitis. Children without HIV get these too, but when a child with HIV has these infections again and again, it is a sign that the immune system is damaged.
- Weight loss, not gaining weight, or not growing can happen for many reasons. Sometimes children lose weight or have trouble putting on weight. Children with HIV are often small for their age and may not grow at the same rate as other children. A child may be undersized or underweight because of a specific problem that needs treatment, or because of a loss of appetite related to the HIV and to some of the drug treatments.
- Lymphoid Interstitial Pneumonitis (LIP) is a chronic (which means it keeps going on) lung problem that causes congestion and coughing. It can be worse at some times and better at others.
- HIV encephalopathy occurs when HIV crosses into the brain and causes problems for children. The parts of the brain most affected are those areas involved with a child's moving and speaking. As a result, children who suffer from encephalopathy can have problems with stiffness or weakness of the arms or legs, poor balance and coordination and may have trouble with things like crawling or walking. It also may affect a child's ability to talk or learn new words. Normal development is slowed and a child may lose skills that were learned earlier.
- Pneumocystis Carinii Pneumonia (PCP) is a lung infection causing coughing, breathing problems, fever and poor appetite. There is some medication that is used to help keep it from happening, and once infection has occurred, it can be treated.
My Child And Others
Many parents worry that their child with HIV could infect others. People do not catch HIV by living in the same house as an adult or child with HIV infection, going to playgroup or school, or sharing toys, food and drink with someone who is infected. Pets and insects cannot pass on the virus.
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HIV is a fragile virus and dies very easily outside the body. However, this is not always the case with other viruses and bacteria. It is therefore important for everyone to use good hygiene, such as washing hands with soap and water to prevent the spread of other infections.
The only extra care you should take is with blood. After cleaning the skin, cover sores and cuts with a bandage for 24 hours, or until a scab has formed.
If splashes of blood get on anybody's skin, eyes or mouth, wash the blood off as soon as possible. Soak any bloodstained clothes in cold water first, and then use ordinary laundry soap or detergent in the normal way.
Clean up any spilled blood with disposable paper towels or tissues and throw it away in a plastic bag. Use hot soapy water to clean the area, or some diluted bleach (one part bleach to nine parts water) and dispose of the dirty paper or tissues as you normally would.
Wearing gloves is necessary only when dealing with blood or bloodstained fluids. It is not necessary to wear gloves when bathing a baby or changing diapers.
Toothbrushes and razors should not be shared, as these objects can cause bleeding during use. Since there is a small chance that infected blood on a toothbrush or razor could infect someone else, it is best not to share these items.
Since HIV is not transmitted by saliva, dishes and utensils can be washed and dried in the usual way. Babies' bottles should be washed and sterilized in the normal way.
You can teach your children what to do if they cut themselves and how to dispose of their used bandages and other items. It is important for all parents to help their children take responsibility for protecting themselves and protecting each other.
HIV And Your Family
When HIV is diagnosed in either parents or children or both, parents tell us they feel a lot of emotions. These emotions include anxiety about their child's health and their own health and the challenges of taking care of themselves and their children. They often feel confused by how things work at the hospital and in the clinic.
These, and many other feelings, are perfectly normal. An HIV diagnosis is very difficult information to take in and causes many changes in a family. This will be a stressful time. Parents say that it is important not to judge yourself or blame yourself or others. No one sets out to get HIV, and no one wants to pass it on to a child or anyone else.
Here are some of the ways that families have learned to live with HIV. Some of them may be useful to you and some may not. Everyone develops his or her own way of getting through these times.
Some have found that maintaining hope, not just for a cure for HIV, but for strength to handle it, has been the biggest source of encouragement for them. Some like to make the best of each day, rather than think a lot about the future. There are parents who like to get all the information they can about HIV and medical treatment, and others who find that trying not to think about it except when necessary helps them most. Some people get their support from other families living with HIV, and some find comfort with HIV/AIDS organization volunteers. Some individuals and families have found strength in their spiritual communities. Most people find ways to continue living their lives as fully as possible.
What support is available to me?
There are many ways to get through problems you may encounter, and your health care team is there to discuss these with you. Even the most complex problems have solutions.
Help can be anything from counselling and support groups to child care, legal advice, and spiritual support services. Financial help for family living costs, special and HIV-related needs, and housing may also be available.
HIV/AIDS organizations often rely on the work of volunteers, unpaid but trained people who wish to be involved in caregiving. Volunteers who are educated in HIV-family issues are available in many city areas and some smaller communities to help out by providing rides to the hospital, child care at home and support for your needs while you and your child are at the clinic. For a more detailed list of support organizations in the Toronto area, please contact your clinic.
Disclosure: Who needs to know about HIV in the family?
Most people are very concerned about whom they should tell or not tell about HIV in the family. It is your right to decide this for yourself. The only people who need to know are the health care staff who work with you and your child, and your family doctor and dentist. As you get to know the health care staff, you will see that they respect your privacy and your right to decide whom to tell about HIV or any other medical problem.
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The HIV clinic team includes the doctor, nurse, social worker, psychologist, dentist and others you may meet who attend to the health care needs of your child at various times. Your family doctor, whom you see for regular medical care near your home, is somebody else who needs to know about your child's HIV. This may be particularly important for your child if she or he is exposed to certain infections. Your family doctor and HIV specialist can consult with each other and you to work out the best treatment for your child. Because infections can start in the mouth, it is also particularly important that all children see a dentist regularly.
A parent living with a partner or a spouse usually decides to tell this person. Finding out about HIV brings stress that you and your partner may choose to work out together. If you have difficulty talking to each other, your social worker or other counsellor may be able to help.
If you decide to tell others outside the hospital, members of your health care team will be available to help you by providing HIV information and counselling, should you wish.
You will also need to decide when is the best time to tell your child about his or her HIV. If you have other children who do not have HIV, you may feel that they also should know. Deciding when and how to tell children is not easy, but keeping secrets from them can also be a problem. Children are often very quick at noticing that something is worrying their parents. They may even find out what it is, but be unsure about whether to talk about it. Even if you decide not to tell them, they need some explanation about what is happening. If they are asking questions, parents have found it is best to give honest answers and as much truth as possible. As always, your health care team can provide guidance and support.
You may also wish to tell those close friends and family members whom you can trust to be supportive and give practical help in times of stress. Experience shows that when families think carefully about whom to tell, they usually receive a lot of support from these people.
What Do Kids Think?
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- They are bothered by the negative talk in their community about HIV and AIDS.
- They feel it is not safe to talk to others, because of stigma.
- They want to be treated like others, but with special consideration in tough times.
- They benefit from contact with others who are infected or affected.
HIV Treatment In Pregnancy
Being HIV positive does not mean that you should not consider having children. Most studies show that HIV disease in mothers does not become worse due to pregnancy.
Unfortunately, until recently there was about a 35 percent chance that a woman would infect her unborn child or children. But, in 1994, a study showed that if pregnant mothers were treated with AZT (zidovudine) during pregnancy, in labour and delivery, and their infants were treated for a short time after birth, that the risk of transmitting the HIV virus to the baby was reduced from 25 percent to 8 percent. We still do not know how AZT affects the babies, but so far no major birth defects have been seen. Iron levels in the blood are sometimes slightly lower for a short time after birth, but (at twelve weeks) return to normal.
In a study of 39 mothers and their babies in British Columbia over the last two years only 7 percent were infected when both mother and infant were treated with AZT. It was important to get the full treatment. The Centre for Disease Control in British Columbia now strongly suggests that all pregnant women get tested for HIV.
In 1995, almost half of all pregnant women were tested here. Twenty-four of these tests were positive, and more than half of these women (sixteen) did not know they were at risk.
I strongly encourage all women to get tested during pregnancy. If you are HIV positive, I encourage you to start treatment to reduce the risk of passing the virus on to your baby. If you are on more than one drug, most specialists encourage women to stay on all the medication even though we do not know the long-term effects of these drugs on the babies. We do know that the chances of infecting your baby increases if you stop taking any of the drugs. As I said earlier, no serious birth defects have been seen.
Of course remember to be healthy during your pregnancy - and make sure you take pre-natal vitamins. Once you have your baby, I do not recommend breast-feeding as you can also transmit the HIV virus to your baby this way, and there are very good formulas that can keep your baby healthy and growing well.
(By Barabara C. Frelau, a family physician in Vancouver).