Conditions Human Immunodeficiency Virus

Acquired immunodeficiency syndrome (AIDS) is a condition in which the body is less able to fight off serious and life-threatening infections. It is caused, overtime, by the human immunodeficiency virus (HIV). When an individual is infected with HIV, the virus begins to attack and damage certain parts of the immune system. This is problematic because the immune system is the body’s protection from invading germs. Eventually, this can lead to a severely weakened immune system (immunodeficiency) known as AIDS. Babies with HIV/AIDS tend to get infections and certain types of cancer that a healthy immune system would normally be able to fight off.

Not all individuals with HIV have AIDS. In fact, some individuals who become infected with HIV may appear healthy for years before developing AIDS. Although there is currently no cure for HIV, there are medications available to help prevent or delay the disease progression. Early identification through newborn screening and proper treatment may allow some babies with HIV/AIDS to live longer, healthier lives.

Condition Type

Other Disorders

Frequency

In the United States, 6,000 to 7,000 women infected with HIV give birth annually. If these women do not receive proper treatment during pregnancy or the newborn period, 25% will transmit the virus to their babies. About 100 to 200 American infants are infected with HIV each year due to mother-to-child transmission.

Also known as

  • HIV

Follow-Up Testing

If you are pregnant, your doctor will most likely conduct a test for HIV, the virus that causes AIDS. If you test positive for HIV/AIDS, you will immediately receive treatment to improve your health and to reduce the risk of passing the infection to your baby.

If your baby’s newborn screening result for HIV/AIDS was positive, your baby’s doctor or the state screening program will contact you to arrange for your child to have additional testing. During the newborn screening test, your baby’s dried blood spot was checked for HIV antibodies, which are proteins the body makes when it is exposed to an infection. If HIV antibodies are present, this means that the mother has HIV/AIDS and that the baby has been exposed to HIV. Not all babies who are exposed to HIV/AIDS develop the condition. However, it is very important to go to your follow-up appointment for a confirmatory test.

Follow-up testing will involve another check of your baby’s blood for HIV DNA and RNA (the genetic material of the virus) at 14-21 days, 1-2 months and 4-6 months of age. Your baby’s doctor may also perform a blood test to look for HIV antibodies when your child is 12 to 16 months of age.

About Human Immunodeficiency Virus

Early Signs

Mothers infected with HIV usually do not have any symptoms unless she has very recently been infected, or has had the infection for a long time and has progressed to AIDS. If she was recently infected, she may have cold or flu-like symptoms. If she has full-blown AIDS, she may have one or more AIDS-defining conditions, such as rare cancers, fungal infections, repetitive bacterial infections, and more. Click here to see a full list of AIDS-defining conditions (opportunistic infections)

At birth, most babies with HIV appear healthy. However, if the condition is left untreated, signs or symptoms may develop within two or three months. Early signs of HIV include:

  • Repeated fungal mouth infections (thrush)
  • Poor weight gain
  • Enlarged lymph nodes
  • Neurological problems
  • Multiple bacterial infections (i.e. pneumonia)
Treatment

If you are HIV-positive, you will immediately be put on highly active antiretroviral therapy (HAART) to reduce the amount of virus in your blood, improve your immune system, and reduce the risk of transmitting the infection to your baby. HAART should consist of a combination of three drugs that must be taken exactly as told by your health care provider.

The doctor may also recommend a cesarean delivery to reduce the risk of your baby being exposed to the virus. Your health care provider may also counsel you on potential AIDS-defining conditions (opportunistic infections) that you may develop during pregnancy, medications to treat those conditions, ways to prevent passing the infection to your infant, and other health recommendations for you and your baby. Counseling will also include psychosocial support and services for HIV-positive women who need assistance.

Medications

Infants born to an HIV-positive mother are usually prescribed a medication called Zidovudine (ZDP) immediately after birth and continue the treatment for 6 weeks. This decreases the risk of mother-to-child transmission of HIV.

If your baby is positive for HIV, there are other medications available to manage the virus. A combined drug regiment called “highly active anti-retroviral therapy” (HAART)is often effective at slowing the progression of the virus and preventing or reducing some of the symptoms. Your baby’s health care provider may also recommend antibiotics to prevent infections that can occur due to a weakened immune system. Babies with HIV will need to have their treatment schedules closely monitored and adjusted regularly.

Modification of Routine Vaccinations

Children with weakened immune systems may not receive live virus vaccines such as measles-mumps-rubella (MMR) and varicella (chickenpox).

It is recommended that children with HIV/AIDS get a yearly flu vaccine beginning at 6 months of age.

Expected Outcomes

With early identification and proper treatment, many babies with HIV can live longer and healthier lives. In fact, many children who are treated early live into adulthood. This is why newborn screening is so important.

Without treatment, HIV in children may progress more rapidly to AIDS. Children with AIDS are at risk for many health complications and even death since they are less able to fight off serious and life-threatening infections.

Causes

Our immune systems are made up of special cells and proteins that protect us from germs and other things in our environment that can cause illnesses and infections. One type of white blood cell, called a T-cell, is very important to our immune system.

Children with HIV have weakened immune systems because the virus attacks and damages T-cells, specifically. This reduces the body’s ability to protect itself from germs and fight off infections. As the condition progresses, the number of T-cells falls to such a low level that the body is considered “immune deficient.” This late stage of HIV is known as Acquired Immunodeficiency Syndrome (AIDS). Children with AIDS are at risk for severe life-threatening infections, some forms of cancer, and deterioration of the nervous system.

HIV can be transmitted through direct contact with the blood or body fluid of someone who is infected with the virus. If a mother becomes infected with HIV before or while she is pregnant, the virus may spread to the baby during pregnancy, childbirth, or breastfeeding.

Support for Human Immunodeficiency Virus

Support Services

Support groups can help connect families who have a child or other family member affected with HIV/AIDS with a supportive community of people who have experience and expertise in living with the condition. These organizations offer resources for families, affected individuals, health care providers, and advocates.

Accessing Care

If you are pregnant and believe that you may have been exposed to HIV or have not yet been tested for HIV, contact your doctor immediately to schedule an appointment.

If your baby is positive for HIV, work with your baby’s health care provider to determine the next steps for your baby’s care. Your baby’s doctor will help you coordinate care with a pediatrician who specializes in HIV/AIDS care. They will help you monitor your baby’s signs and symptoms and determine whether treatment is necessary, and if so, what type of treatment will be most beneficial for your baby. Depending on the signs and symptoms your baby experiences, your baby’s doctor and HIV/AIDS specialist may work with other medical resources in your community.

Families' Experiences

At this time we have not located a family story for this particular condition. If your family is affected by HIV/AIDS and you would like to share your story, please contact us so other families may learn from your experience.

References & Sources

Visit the Centers for Disease Control and Prevention website for more resources on HIV

Visit the AIDS Education and Training Centers National Resource Center for more information on HIV

Krist A, Crawford-Faucher A. Management of Newborns Exposed to Maternal HIV Infection. Am Fam Physician. 2002 May 15;65(10):2049-2057.

ACT Sheets

Healthcare professionals can learn more about confirmatory testing by reading the American College of Medical Genetics and Genomics' Algorithm for Diagnosis and ACT Sheet, a guide for follow-up after newborn screening. You can visit this page of the ACMG website here.

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