Women & HIV/AIDS

Parenting a Child with HIV

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• Having a Child with HIV/AIDS
  • Drug Therapy
  • Keep Your Child's Medicines on Track
  • Infections
  • Coping Issues
• Mothers with HIV/AIDS
  • Planning for Your Child's Future
• Additional Resources on Having a Child with HIV/AIDS:
• Additional Resources on Mothers with HIV/AIDS:

Having a Child with HIV/AIDS

If you are a parent of a child with HIV/AIDS, you can take comfort knowing that there is hope for your child's future. Eighty percent of infected children have a slow rate of disease progression. Children age 5 and older have rates of disease progression similar to young adults. With treatment children with HIV survive for longer now and have an improved quality of life because of new HIV drugs, good care, and fewer opportunistic infections.

Drug Therapy

There is no cure for HIV/AIDS, but there are HIV medicines (also called antiretrovirals) that slow down the disease. Guidelines for treating infants and children with HIV are changing as experts learn more from treatment studies. Ask your child’s doctor about the best time to start HIV treatment. This will depend upon many factors. Keep in mind that even if treatment is able to decrease the amount of HIV in your child’s blood so that it is undetectable, your child still has HIV and still needs treatment.

Since no single drug can fight HIV alone, your child will take several drugs every day once treatment begins. He or she will have to take them exactly how your doctor tells you to. Your child can't miss doses or stop taking the drugs or they won't work. Ask your child’s doctor about any side effects the drugs might cause, such as changes in body shape, muscle problems, or vomiting, so you will be ready to help your child.

If your child is in school, it's important that your child gets all of his or her HIV medicines. You and your child (if appropriate) should decide what school staff to tell about his or her HIV status. The person giving the medicines should be told your child's HIV status, side effects of the drugs, and special requirements (like drugs that have to be taken with food). The school should keep your child's HIV status confidential unless you decide to tell other staff.

Keep Your Child's Medicines on Track

Below are some tips for keeping your child on schedule with his or her medicines and helping your child take the medicines.

• Give your child the medicines. Make sure he or she takes the medicine. As your child gets older, involve him or her in taking more responsibility for taking the medicines.

• Use a special medicine measure with animals or other pictures on it.

• Give your child a lifesaver or licorice if the medicine tastes bad.

• Think about why you might have trouble sticking to the medicine schedule. For example, if a drug needs to be taken after a meal, it might mess up a special playtime or routine you have with your child. Talk to your doctor about these barriers and making the treatment plan fit you and your child's lifestyle.

• Plan your meals. Some drugs have to be taken with food. Plan when your child will eat so the right drugs can be taken with the right amount and type of food.

• Write down information about the medicines. This includes the drug name, when to take it, how much to take, and if your child takes it with food or on an empty stomach. Use this planner to organize your child's medicines.

• Don't leave your doctor's office until you understand how your child takes the drugs.

• Organize the medicines. Use daily or weekly pill boxes (or even egg cartons).

• Don't forget! Use timers, alarm clocks, or pagers to remind you to give your child his or her medicines. You could even write it in your planner.

• Plan ahead. Weekends and holidays make it harder to remember to stick to the medicine schedule. Figure out a plan ahead of time so you won't forget. If you're traveling, keep medicines with you, just in case your checked luggage is lost.

• Get refills on time. Don't miss a dose!

• Write down the problems your child has with the drugs. It will help you remember and track the problems.

• Tell your doctor right away if your child has side effects or other problems. Work with your doctor to make the treatment plan right for your child. You might be able to change it to make it better.

Infections

Children with HIV can get infections, just like adults. Because a child's immune system is quickly impaired by HIV, children are more likely to get certain infections that children without HIV might not get. Common infections in children with HIV are listed below.

• Bacterial infections that are common include pneumonia, ear infections, meningitis (symptoms include fever, vomiting, stiff neck, and irritability), staph (skin infection), salmonella (symptoms include severe diarrhea), and urinary tract infections.

• Candidiasis (kan-dih-DEYE-uh-suhss) is a yeast infection that can cause diaper rash and infections in the mouth and throat that make eating painful. It can cause swelling and a thick white coating on the mouth, tongue, throat, and esophagus.

• Crypto, or cryptosporidiosis (krip-toh-spar-ihd-ee-OH-suhss), happens when you put something in your mouth that has been in contact with the bowel movement (BM) or poop of a person or animal that has crypto. While some people have no symptoms, it can cause diarrhea, stomach cramps, nausea, fatigue, weight loss, appetite loss, vomiting, dehydration, and fever.

• CMV, or cytomegalovirus (seye-tuh-meg-uh-loh-VEYE-ruhss), can cause lung problems, slow weight gain, swollen glands, rash, blood problems, infections, and blindness.

• HIV encephalopathy (in-sef-uh-LOP-uh-thee) is infection in the brain. The brain swells and can cause seizures, developmental delay, and dementia.

• HIV wasting syndrome is the inability to keep weight on because of infections and loss of appetite from HIV.

• LIP, or lymphoid interstitial pneumonitis (int-ur-STISH-uhl noo-muh-NYT-uhss) affects the lungs and causes coughing, wheezing, shortness of breath, and tightness in the chest. It makes breathing harder and harder. Often, the child is put into the hospital.

• MAC, or mycobacterium avium (meye-koh-bak-TUR-ee-uhm AY-vee-uhm) complex, usually infects people through their lungs or intestines. It spreads quickly through the body. Widespread MAC disease causes fever, night sweats, weight loss, stomach pain, tiredness, and diarrhea. MAC germs can be found in most sources of drinking water, like treated water systems, in dirt, and in household dust. MAC disease does not seem to be spread from one person to another.

• PCP, or pneumocystis carinii (noo-muh-SISS-tuhss kuh-REYE-nee-ee) pneumonia, is the leading cause of death in HIV-positive children. It attacks the lungs. Symptoms are cough or trouble breathing. Most scientists believe PCP is spread in the air, but they don't know if it lives in the soil or someplace else. Take your child to your doctor right away if she or he has these symptoms.

Coping Issues

Having HIV affects your child’s physical and emotional health. Coping with HIV can be hard for children with HIV, who face a variety of challenges:

• Intimidation by doctors
• Loneliness while away from family if hospitalized
• Orphaned by parents who had AIDS
• Social stigma
• Side effects from medicines (like being too tired to play with other kids)
• Fear of disability and death
• Feelings of anger, anxiety, or sadness

It's hard to predict how your child will cope with having HIV. Talking with your doctor, other parents with HIV-positive children, and school staff can help you and your child. There is support available to help you get through those challenges.

Mothers with HIV/AIDS

Motherhood is a wonderful experience. Although our children need so much from us, they give us much more in return — hope and a sense of humor are just a few! However, if you are a mother living with HIV/AIDS, you know that having a child brings many more worries to your life than what other mothers might have. Besides the normal increase in responsibilities and demands on you as a parent, you will have to struggle with:

• Telling your child about HIV — if you should and how to do it
• If your child will be rejected if people find out about your HIV
• Discrimination from your child's school
• Disciplining your children
• Parenting your child in spite of feeling drained from HIV/AIDS
• Complications or drug side effects
• Giving your child a happy and secure life
• Planning for the care of your child in the future

A strong support network can help you to cope with the challenges of mothering with HIV. Talking with other mothers who are HIV-positive can give you the confidence you need to be a good mother to your own children.

Planning for Your Child's Future

Having HIV/AIDS no longer means a short life. Women with HIV/AIDS are living longer and raising families. But as is the case for all people, none of us know exactly how long we will live. All parents, including parents who are HIV-positive, need to think about and make plans for their children's future care and custody. Doing so at the early stages of illness, when you are feeling your best, is a good idea. Deciding who will be the guardian, or the person who will take care of your kids if you're too sick or if you pass away, is not easy. There are several different types of guardians.

• Inter vivos (VEE-vohs) guardian. You give complete responsibility to someone else while you're alive. It goes into effect right away.

• Standby guardian. This guardian is selected and is on standby until you want this person to be the guardian. You still have custody, so you won't give up your rights as a parent. So if you need it, the standby guardian can help you while you're alive.

• Testamentary guardian. You put the guardian's name in your will. The guardian will only be able to have authority over your children after you die. The guardian must petition the Family Court to get appointed.

• Standby adoption. You appoint a person to adopt your child at a specific time. The adoption doesn't happen right away, and the parent can advocate for the best interests of the child while alive.

• Traditional adoption. You give up your parental rights and custody of your child.

States have different laws on how to select a guardian. Talk to a lawyer for more information about the laws in your state.

Additional Resources on Having a Child with HIV/AIDS:

Publications

1.   Caring for Someone With AIDS at Home — This publication provides information on HIV/AIDS, what it is, pointers on taking care of people with AIDS, referral sources, providing support, and guarding against infections.

   http://www.cdc.gov/hiv/resources/brochures/careathome/index.htm

2.   HIV Infection in Infants and Children — This publication gives information on the scope of the problem of HIV in children, transmission, prenatal HIV transmission, and diagnosis. Additional information is provided regarding the progression of the disease, signs and symptoms of pediatric HIV disease, treatment of children and adolescents with HIV/AIDS, and AIDS-related psychosocial issues.

   http://www.niaid.nih.gov/factsheets/hivchildren.htm

3.   Insure Kids Now! — Insure Kids Now! is a national campaign that links the nation's uninsured children, from birth to age 18, to free and low-cost health insurance.

   http://www.insurekidsnow.gov/

4. Children and HIV (Copyright © NYU School of Medicine) — This publication discusses the problems of HIV in children. It explains how children and teens can get HIV, what "HIV-positive" means, and what HIV and AIDS are. It provides information on treating HIV in younger patients, information about clinical trials, and other details parents of children with HIV should know.

   http://www.hivinfosource.org/hivis/hivbasics/children/index.html

5. HIV & AIDS (Copyright © Nemours Foundation) — This guide for parents explains what HIV and AIDS are, how HIV is spread, signs and symptoms of infection, diagnosis, treatment, complications of HIV/AIDS, and long-term care of children with HIV/AIDS. It also includes advice on how to talk to your children about HIV/AIDS and its prevention.

   http://kidshealth.org/parent/infections/std/hiv.html

6. Women, Children, and HIV (Copyright © UCSF, UMDNJ) — This web site provides resources on the prevention and treatment of HIV infection in women and children for health workers, program managers, and policy makers in resource-limited settings.

   http://www.womenchildrenhiv.org/

Organizations

1.   AIDSinfo
2.   Eunice Kennedy Shriver National Institute of Child Health and Human Development, NIH, HHS
3. AIDS InfoNet
4. Center For AIDS Research at NYU School of Medicine
5. Elizabeth Glaser Pediatric AIDS Foundation
6. Family Ties Project
7. UCSF Center for HIV Information (CHI)

= Indicates Federal Resources

Additional Resources on Mothers with HIV/AIDS:

Publications

1.   Breastfeeding and HIV/AIDS Frequently Asked Questions (Copyright © Linkages Project) — This fact sheet for health care professional and mother with HIV discusses the current studies and their results about HIV transmission through breastfeeding. It describes when a mother should be advised not to breastfeed.

   http://www.linkagesproject.org/media/publications/frequently%20asked%20questions/FAQ_HIV_Eng_04-04.pdf...

2.   HIV Transmission through Breastfeeding: A Review of Available Evidence (Copyright © WHO) — This report discusses the pros and cons of an HIV-positive mother breastfeeding, discusses the available research on the topic, describes how transmission occurs and how to prevent it, and concludes with information about further research that still needs to be done on the issue.

   http://www.who.int/reproductive-health/docs/hiv_infantfeeding/breastfeeding.pdf

3. Infant Feeding and HIV (Copyright © UNICEF) — This easy-to-read publication outlines the risks and benefits of breastfeeding for mothers with HIV. It provides advice on getting tested for HIV and ways a woman with HIV can provide the nutrition her baby needs instead of breastfeeding.

   http://www.unicef.org/nutrition/23964_infantfeeding.html

4. Infant Formula (Copyright © AAFP) — If you are unable to breastfeed, this publication gives information on choosing and preparing infant formula. It provides information on bottle warming and also explains the different types of formula that you can purchase and how to prepare it.

   http://familydoctor.org/178.xml

5. Prevention of Parent-to-Child Transmission of HIV/AIDS (Copyright © UNICEF) — This publication provides statistics on the frequency of mother-to-child transmission of HIV and the clear difference of transmission rates between a parent taking preventative steps and one who neglects prevention.

   http://www.unicef.org/aids/index_preventionMTCT.html

6. Standby Guardianship (Copyright © Family Ties Project) — Standby guardianship allows the custodial parent to make future plans for his or her children without having to legally transfer decision-making power. This web site provides detailed information on the Standby Guardianship Act of 2002 in the District of Columbia and information and resources on similar legislation in the other states.

   http://www.standbyguardianship.org

7.   Standby Guardianship (Copyright © NAIARC) — This fact sheet gives the legal definition of standby guardianship and its history, and lists the reasons parents have used standby guardianship. It also explains how standby guardianship works and how to overcome obstacles for putting an arrangement in place.

   http://aia.berkeley.edu/media/pdf/2005_standby_guardianship_fact_sheet.pdf

8. Women, Children, and HIV (Copyright © UCSF, UMDNJ) — This web site provides resources on the prevention and treatment of HIV infection in women and children for health workers, program managers, and policy makers in resource-limited settings.

   http://www.womenchildrenhiv.org/

Organizations

1.   AIDSinfo
2.   CDC-INFO
3. AIDS InfoNet
4. Family Ties Project
5. National Abandoned Infants Assistance Resource Center

= Indicates Federal Resources

Content last updated March 4, 2009.