Congenital HIV

At Boston Children’s Hospital, we understand that you may have a lot of questions when your child is diagnosed with congenital HIV, such as:

• What exactly is it?
• How did he get it?
• What are potential complications in my child’s case?
• What are the treatments?
• Are there any possible side effects from treatment?
• How will it affect my child long term?

We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can explain your child’s condition and treatment options fully.

Background

Women with HIV can infect their babies while they’re pregnant or during delivery. HIV can also be passed from mother to baby through breast milk.

• However, if mothers receive treatment for HIV during their pregnancy, the risk of passing the virus to their babies can be significantly reduced.

Causes

What causes congenital AIDS/HIV?

Congenital HIV is the result of the virus spreading to babies born to, or breastfed by mothers infected with the virus; however, not every child born to an HIV-infected mother will acquire the virus.

• Due to advances in anti-retroviral drugs and research breakthroughs by centers like the Children's Hospital AIDS Program (CHAP), the transmission rate from mother to child is currently 1 percent.

Is congenital AIDS/HIV common?

Between 6,000 and 7,000 children are born to HIV-infected mothers each year in the United States.

Symptoms

Even though there are no symptoms of HIV, the virus is actively infecting and killing cells of the immune system. As the immune system deteriorates, complications begin to develop. Symptoms vary child-to-child depending on age, but may include:

• lymph nodes that remain enlarged for more than three months
• lack of energy
• weight loss
• frequent and long-lasting fevers and sweats
• persistent or frequent yeast infections (oral or vaginal)
• persistent skin rashes or flaky skin
• pelvic inflammatory disease that does not respond to treatment
• short-term memory loss
• frequent and severe herpes infections that cause mouth, genital, or anal sores or a painful nerve disease known as shingles.
• delayed physical and developmental growth as evidenced by poor weight gain and bone growth
• swollen abdomen (due to swelling of the liver and spleen)
• intermittent diarrhea (diarrhea that may come and go)
• oral thrush (a fungal infection in the mouth that is characterized by white patches on the cheeks and tongue)
• constant or recurring ear infections
• swelling of the lung tissue
• hepatitis
• chickenpox that may include the digestive track
• two serious bacterial infections in two years (such as meningitis and pneumonia)
• yeast infections in the lungs or digestive track
• kidney disease
• tumors or malignant lesions

Long-term outlook

While there is no cure for HIV and AIDS, advances in medicine allow infants infected with HIV to live longer than ever before.

For more information about how congenital HIV is treated, as well as how the risk of passing the infection to your baby can be reduced, see the Treatment and Care tab.

Questions to ask your doctor

If you have been infected with HIV or are at risk of infection, you probably have some questions about the condition and how it can affect your baby.

You may find it helpful to jot down questions as they arise—that way, when you talk to your doctor, you can be sure that all of your concerns are addressed.

Here are some questions to get you started:

• Should I get tested for HIV?
• What can I do to prevent infection?
• I’m infected. Is there any way to prevent passing it on to my baby?
• What steps can we take if my baby does get infected?
• What’s the long-term outlook for a baby with HIV?

Prevention

Pregnant mothers can reduce the chances of their child getting AIDS/HIV by taking anti-retroviral drugs before giving birth and opting for a Cesarean section.

Vaccines

Parents often ask if children who have HIV can receive the regular childhood vaccinations. You should always discuss your child's medical options with your doctor, but the following vaccinations are typically safe to give to child with HIV:

• MMR, or measles, mumps, and rubella vaccine
• DTaP/Td vaccine (diphtheria, tetanus, and pertussis)
• Hib (Haemophilus influenzae type b)
• Hep B (hepatitis B)
• Hepatitis A vaccine is only recommended for those children that live in areas where hepatitis A is common.
• VZIG (varicella vaccine) should be considered for known HIV-positive children, and is recommended in children who have a known exposure to chickenpox or shingles.
• A yearly influenza vaccine (or "flu shot") is recommended for children with HIV, as well as any individual living in the same household as a child with HIV.

FAQ

Q: What is HIV?

A: HIV stands for Human Immunodeficiency Virus. HIV is the virus which, when untreated, becomes AIDS, or Acquired Immune Deficiency Syndrome. The virus attacks the body's immune system, especially white blood cells called CD-4 cells (also called "T-cells").

Q: Why is HIV a problem?

A: HIV can be passed from a mother to her child during pregnancy or delivery as well as through breast milk.

• Due to advances in anti-retroviral drugs and research breakthroughs by centers like the Children's Hospital AIDS Program (CHAP), the transmission rate from mother to child is currently 1 percent.
  • If the mother is not treated, HIV has a much greater chance of infecting the baby.

Q: Is there any way to prevent infection?

A: Pregnant mothers can reduce the chances of their child getting AIDS/HIV by taking anti-retroviral drugs before giving birth and opting for a Cesarean section.

If you’re pregnant and think you may have been exposed to the virus, ask your doctor to screen you for HIV as soon as possible.  

Q: How is HIV diagnosed?

A: An HIV-infected child is usually diagnosed with AIDS when his or her immune system becomes severely damaged or other types of infections occur. To determine whether your child has HIV, your doctor will perform different blood tests.

• Early HIV infection must be detected by testing your child's blood for the presence of antibodies (disease-fighting proteins) to HIV. These HIV antibodies generally do not reach levels high enough to detect by standard blood tests until one to three months following infection, and may take as long as six months.
• When a person is highly likely to be infected with HIV, but antibody tests are negative, a test for the presence of HIV itself in the blood is used. Repeat antibody testing at a later date, when antibodies to HIV are more likely to have developed, is often recommended.
• An infant born to an HIV-infected mother may not test positive at birth and it may be necessary for the infant to undergo multiple blood tests at different intervals during her first six months of life.

Q: What symptoms might my baby have?

A: Babies born with HIV experience no immediate symptoms.

• However, if you have HIV, it’s important to have your baby checked for signs of the virus several times during her first six months.

Even though there are no symptoms, the virus is actively infecting and killing cells of the immune system. As the immune system deteriorates, complications begin to develop. Symptoms vary child-to-child depending on age, but may include:

• lymph nodes that remain enlarged for more than three months
• lack of energy
• weight loss
• frequent and long-lasting fevers and sweats
• persistent or frequent yeast infections (oral or vaginal)
• persistent skin rashes or flaky skin
• pelvic inflammatory disease that does not respond to treatment
• short-term memory loss
• frequent and severe herpes infections that cause mouth, genital, or anal sores or a painful nerve disease known as shingles.
• delayed physical and developmental growth as evidenced by poor weight gain and bone growth
• swollen abdomen (due to swelling of the liver and spleen)
• intermittent diarrhea (diarrhea that may come and go)
• oral thrush (a fungal infection in the mouth that is characterized by white patches on the cheeks and tongue)
• constant or recurring ear infections
• swelling of the lung tissue
• hepatitis
• chickenpox that may include the digestive track
• two serious bacterial infections in two years (such as meningitis and pneumonia)
• yeast infections in the lungs or digestive track
• kidney disease
• tumors or malignant lesions

Q: What are our treatment options?

A: The Children's Hospital AIDS Program (CHAP) treats congenital HIV in infants.

As with many other conditions, early detection of HIV offers more options for treatment. Today, there are medical treatments that can slow down the rate at which HIV weakens the immune system, but currently, there is no cure for the disease. However, there are other treatments that can prevent or cure the conditions associated with HIV.

Traditional treatments for AIDS/HIV in pregnant women:

• Anti-retroviral drug therapy may be given to a pregnant woman, and has proven to greatly reduce the chance of an infant developing HIV.
• A Cesarean section may be recommended to reduce infant transmission from the birth canal.
• In the United States, where other feeding options are available, an infected mother should be discouraged from breastfeeding her infant.

Q: What is my child’s long-term outlook?

A:While there is no cure for HIV and AIDS, advances in medicine allow infants infected with HIV to live longer than ever before.

For more information about how congenital HIV is treated, as well as how the risk of passing the infection to your baby can be reduced, see the Treatment and Care tab.

Q: What makes Children’s Hospital Boston different?

A: Our physicians are expert, compassionate and committed to focusing on the whole child, not just his condition—that’s one reason we’re frequently ranked as a top pediatric hospital in the United States.

The Children's Hospital AIDS Program (CHAP) is New England's largest clinic of its type. During the past two decades, our multidisciplinary team has helped CHAP become an international leader in HIV and AIDS care and clinical research. Research pioneered by our team and others, as well as the success of anti-viral drugs, has transformed the disease from a death sentence to a manageable condition.

And at Children’s, we consider you and your child integral parts of the care team and not simply recipients of care. You and your care team will work together to customize a plan of care for your child.

How do we diagnose congenital HIV?

The first step in treating your child is forming an accurate and complete diagnosis.

An HIV-infected child is usually diagnosed with AIDS when his or her immune system becomes severely damaged or other types of infections occur. To determine whether your child has HIV, your doctor will perform different blood tests.

• Early HIV infection must be detected by testing your child's blood for the presence of antibodies (disease-fighting proteins) to HIV. These HIV antibodies generally do not reach levels high enough to detect by standard blood tests until one to three months following infection, and may take as long as six months.
• When a person is highly likely to be infected with HIV, but antibody tests are negative, a test for the presence of HIV itself in the blood is used. Repeat antibody testing at a later date, when antibodies to HIV are more likely to have developed, is often recommended.
• An infant born to an HIV-infected mother may not test positive at birth and it may be necessary for the infant to undergo multiple blood tests at different intervals during her first six months of life.

After we complete all necessary tests, Children’s Hospital Boston’s experts meet to review and discuss what they have learned. Then we will meet with you and your family to discuss the results and outline the best treatment options.

How do we treat congenital HIV?

At Boston Children's Hospital, we know how difficult a diagnosis of HIV can be for your whole family. That's why our physicians are focused on family-centered care:

• From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs. We'll work with you to create a care plan that's best for your child.

As with many other conditions, early detection of HIV offers more options for treatment. Today, there are medical treatments that can slow down the rate at which HIV weakens the immune system, but currently, there is no cure for the disease. However, there are other treatments that can prevent or cure the conditions associated with HIV.

Traditional treatments for AIDS/HIV in pregnant women

• Anti-retroviral drug therapy may be given to a pregnant woman, and has proven to greatly reduce the chance of an infant developing HIV.
• A Cesarean section may be recommended to reduce infant transmission from the birth canal.
• In the United States, where other feeding options are available, an infected mother should be discouraged from breastfeeding her infant.

At Boston Children's Hospital AIDS Program (CHAP), our researchers are studying once-a-day and combination therapies with the goal of simplifying treatment. We're also working to determine the impact of combining strong anti-viral therapy with medications to a co-infection, such as tuberculosis, to make sure drugs continue to be effective when combined. Internationally, our research focuses on preventing transmission, designing pediatric anti-viral treatments, vaccine testing and preventing tuberculosis in children with HIV.

At Children's, we consider you and your child integral parts of the care team and not simply recipients of care. You and your care team will work together to customize a plan of care for your child.

Prevention: The best treatment

Because HIV/AIDS is incurable, the best treatment is avoiding infection.

Here are a few tips for pregnant women to reduce the chances of passing the infection to their babies:

• Take anti-retroviral drugs before giving birth.
• Opt for a Cesarean section.

Coping and support

It's essential to remember that while hearing that your child is infected with HIV can feel very isolating, many children and their families have been down this path before. We've helped them, and we can help you, too. There are lots of resources available for your family — within Children's, in the outside community and online. These include:

Patient education: From the very first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. And they'll also reach out to you by phone, continuing the care and support you received while at Children's.

Parent to parent: Want to talk with someone whose baby has been treated for congenital syphilis? We can put you in touch with other families who have been through similar experiences and can share their experience.

Faith-based support: If you are in need of spiritual support, we'll help connect you with the Boston Children's Department of Spiritual Care (chaplaincy). Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during the time you and your child are in the hospital.

Social work and mental health professionals: Our social workers and mental health clinicians have helped many other families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

On our For Patients and Families site, you can read all you need to know about:

• getting to Children's
• accommodations
• navigating the hospital experience
• resources that are available for your family