Congenital HIV | Diagnosis & Treatments

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