If You Are a Woman Who Has Given Birth While HIV Positive...

My name is LaVerne and I'm a Treatment Advocate at Women Alive. On April 12, 2000 I gave birth to a beautiful 8-pound baby boy named Marques. During my pregnancy, I had to interrupt my current regimen of Abacavir and Combivir and just take the Combivir to prevent transmission. I had to eliminate the Abacavir because there has not been enough testing and research in terms of the effects of Abacavir on embryos.

For the first 6 weeks of Marques' little life, he had to take AZT 4 times a day. The doctors believe that this helps to prevent newborns from getting HIV. Marques has been given his first viral DNA test which came back negative. He'll continue to be tested until he's 18 months old. His next test is scheduled for October, when he'll be 6 months.

Considering that Marques continues to test negative for HIV with the DNA/viral load test that the doctors are using, this gives me great hope that he is HIV negative. Now, I have a lot of questions.

My first question is what, if any, will the adverse effects be to Marques from the Combivir that I took throughout my entire pregnancy? The follow-up question is what if any, immediate adverse effects can result from the medication that he was given for those first 6 weeks? Also, what if any, would the long-term effects be? Assuming that he is indeed HIV negative, the reason I am giving him medication is to keep him healthy. But, no one seems to be able to tell me if when he grows up, he may have health problems as a result of these anti-HIV medications.

Many HIV-positive women who have given birth since the advent of preventive antiretroviral treatment for pregnant women and their infants share my concerns. The health and well-being of our children is of the utmost importance. I recently found out about a study that is looking at these issues and I'd like to share the information with you.

I think it is very important that we understand the full scope of both the benefits and possible negative outcomes of these treatments for ourselves and our children.

We can only hope that research could answer
these questions for us sooner than later.

This study is designed for the children born to HIV+ women who took medication. It includes both negative and HIV positive children. The purpose of this study is to determine the following: if uninfected infants born to infected women demonstrate any short/long term effects whether clinical or laboratory, late outcomes over time in growth, neurologic and neurophysiological function (to study the relationship between the brain and behaviors), the quality of life, organ system toxicity, of there are any metabolic disorders or problems with the development of the immune system. The study will also look at the progression of the virus in HIV infected infants, children and adolescents.

During the study, children will have physical exams, medical history, Tanner staging (to follow the growth of genitalia in boys, and breast growth in girls), neurologic exams, and quality of life assessments every 6 months if the children are under 3 years of age. For children 3 and older every 12 months they'll have blood chemistries. Urinalysis is given every 6 months to infected children, and every 3 years in those that are uninfected. The kids that were born HIV+ undergo urinalysis every 6 to 12 months depending on their age. Participants are followed until age 21 or until they become unavailable for follow up.

The minimum age required to participate in the study is 1 day old to the maximum age of 20 years. You can be a male or female, and have an uspecified CD4 count. This means your T-cells can be at any level. However, the patient must meet at least one of the following criteria:

1. Born to an HIV-infected woman who is currently enrolled or has been in an ACTG perinatal study, such as 076, 358, or the ACTG 386 study while pregnant with this child.
2. Undeterminate HIV status and received antiretroviral therapy in an ACTG treatment study.
3. HIV-infected infant, child, adolescent whose mother was currently or previously enrolled in an ACTG perinatal study.
4. Children or adolescents already enrolled in a long-term survivor study.

Perinatally exposed and HIV-infected infants, children and adolescents who are unable to adhere to the 219 study schedule are excluded from this study. (In other words, if you keep missing your appointments, they drop you from the study.)

I hope this study helps to ease some of your worries. At least we know that the researchers are looking for answers for us. But at this point, the answer about adverse effects of medications on our children is, like so many other things; we need to do more research. We need these answers because there are so many HIV positive women who would like to have a baby, and there are others who have had a baby while HIV positive. Are we just supposed to "wait and see" if our children grow up healthy? I would hope that research could answer these questions for us sooner than later. If you would like more information about having a baby after you have tested HIV positive, or you need to know where there is a study site closest to you, please call us at Women Alive 1-800-554-4876.