Photo © Jani Bryson.
Well, as you suspected, your pregnancy test is positive. Congratulations! Pregnancy can be an exciting time, and a really wonderful experience. Of course, now that you're expecting, you probably have lots of questions, some of which relate to how your HIV-positive status will impact your pregnancy and your baby.
The goal in every pregnancy is to keep both mom and baby healthy -- and I'm happy to say that this is a goal that's well within your reach. Just because you have HIV does not mean you can't have a happy, healthy pregnancy, and a happy, healthy baby. Basically, the same things that keep you healthy will keep your baby healthy. Risks of transmitting the virus to your baby decrease as your own viral load decreases.
In fact, if you are on HIV medication and take the medications as prescribed, there's only a 1% chance of passing HIV to your baby. In my 11 years as an HIV specialist, and having seen over 150 pregnant patients with HIV, I have never had a patient pass HIV to her baby. However, if you're not on HIV meds, or don't take them like you're supposed to, there's a 25% chance (basically a one in four chance) that you will pass HIV to the baby. Even medication at the last minute, at the time of labor, cuts the risk and some states have laws about testing mothers during labor if an HIV test result is not on file for the pregnancy.
So let's talk about what you need to do to keep both you and your little one healthy. Many women wonder how HIV can be transmitted to the baby. HIV can be transmitted during pregnancy, during labor and delivery, or by breastfeeding. We'll talk about what you can do during pregnancy, during labor, and after your baby is born to decrease the chances of transmitting the virus.
Keeping your viral load low is important during pregnancy to reduce the risk of transmission. Regardless of what is recommended based solely on your CD4+ and VL levels, you may want to start taking HIV meds as soon as you learn you are pregnant. Yes, there are guidelines from the Department of Health and Human Services (DHHS) that recommend when to start treatment based on CD4+ and VL, but there are groups of people for which treatment is recommended no matter what. Pregnant women are one of those groups. We are trying to prevent your baby from becoming infected.
Earlier initiation of therapy may be more effective in reducing in utero transmission. In fact, a 2010 study conducted in France found that "early and sustained control of HIV viral replication is associated with decreased residual risk of transmission and favors initiating HAART drugs as early in pregnancy as possible for all women." In other words, starting HAART (highly active antiretroviral therapy) drugs early to control the viral load as much as possible decreased the chances that the virus would be transmitted to the baby. In fact, we know that having an undetectable viral load substantially lowers the risk of transmission of HIV to the fetus and lessens the need for consideration of cesarean delivery (C-section). That's why I have always suggested that my patients start HAART immediately after learning about their pregnancy.
So, if you are not currently taking HIV medications (whether you are treatment-naive or have taken them in the past), tell your HIV specialist about what medications you've taken in the past and provide all laboratory tests (genotypes, phenotypes, HLA B*5701) and be honest about any adherence issues that you've had in the past. Also talk about any tolerability issues and drug allergies you have had with any old regimen(s).
As soon as you learn that you're pregnant, you should contact your HIV specialist to discuss your options for medication and to review what you're currently taking to make sure your medications are safe for the baby. If you are taking HIV medication, like HAART, your clinician will likely continue your treatment. However, if you are taking a regimen that contains efavirenz (Sustiva, which is also a component of Atripla), you'll need to make a change. Efavirenz is a Pregnancy Category D medication, meaning it should not be taken while pregnant, especially during the first trimester of your pregnancy. It's reassuring, however, to know that of 14 studies with 1,345 pregnant women on efavirenz published in the journal AIDS two years ago, there was only one infant born with a birth defect, a rate no different from the general population of pregnant women.
Many women wonder if HIV medications are going to harm their babies or themselves. Several HIV medications have been found to be safe for pregnant women and babies. As a matter of fact, there is an international registry (the Antiretroviral Pregnancy Registry) that monitors for potential birth defects in infants exposed to HIV medications in utero. The Department of Health and Human Services (DHHS) currently recommends Kaletra and Combivir taken twice a day. Ask your HIV specialist what is going to be best for you and keep in mind that results of any past or current genotype test will also be considered. If you have a viral load of more than 1,000 copies, your provider will order a genotype before starting you on medications. Any drug resistance found by the test may limit your treatment options.
So there is a lot to consider here, and you should have discussions with both your obstetrician and HIV specialist to help determine what is best for you and your baby. Assuming that you have an HIV specialist, your specialist will refer you to an obstetrician who has experience with HIV-positive mothers. If you don't have a specialist, now might be a good time to seek one out. You can visit the websites of the American Academy of HIV Medicine and the Gay and Lesbian Medical Association, or call the National AIDS Hotline (open 24 hours a day every day of the year) at 1-800-CDC-INFO (232-4636).
It can be very helpful to have an obstetrician with experience treating HIV-positive women, in part because the decisions regarding whether to use certain "invasive" genetic tests can be difficult. Many pregnant women undergo a variety of screening tests. During the first trimester these tests include a fetal ultrasound and a blood test for mom. This screening process can help determine the risk of the fetus having certain birth defects (Down syndrome, trisomy 18, or trisomy 13). Second trimester prenatal screening may include additional blood testing (of mom) called Multiple Markers. These include alpha-fetoprotein (AFP), hCG, estriol, and inhibin. These markers provide information about a woman's risk of having a baby with genetic conditions or birth defects. This screening is usually performed between the 15th and 20th weeks of pregnancy.
If the results of these tests are abnormal, genetic counseling is recommended. Additional testing may be needed for an accurate diagnosis. These tests include chorionic villus sampling (CVS) and amniocentesis, both of which are considered "invasive." During amniocentesis, a small amount of amniotic fluid is removed by inserting a long, thin needle through your belly and into the womb. In CVS, chorionic villi cells are removed from the placenta, either in the same way amniocentesis is performed or through the cervix using a catheter and gentle suction.
Because these tests are invasive, they involve at least a theoretical increased risk of transmitting the virus to the baby. To date, there have been 159 reported invasive procedures on HIV-positive moms with no transmission of HIV to the baby. In all cases, women were on HAART with undetectable viral loads and though no transmissions of HIV have occurred, a small increase in risk can't be ruled out. Therefore, any HIV-positive woman undergoing any invasive procedure should be on HAART and have an undetectable viral load at the time of the procedure.
Some experts consider CVS too risky to offer to their HIV-positive patients and recommend limiting invasive procedures to amniocentesis only, but existing data on transmission risk associated with these procedures are limited. Invasive testing procedures should be discussed thoroughly with your OB and between you and your partner. Your OB (or genetic counselor) will discuss the pros and cons of invasive testing with you. But ultimately, whether to test (or not to test) is a personal decision.
Again, the goal is to limit the baby's exposure to the virus. So it's probably not surprising that your options for labor and delivery depend upon your viral load (another important reason to take your HIV meds as prescribed). The American College of Obstetricians and Gynecologists (ACOG) has recommended considering a scheduled C-section delivery for HIV-positive women since 1999. A scheduled C-section is recommended for women with a viral load that's greater than 1,000 copies/mL near the time of delivery (36 weeks' gestation) and for any woman with an unknown viral load. It is also recommended for women who did not receive HIV medication during pregnancy. In these situations, ACOG recommends a scheduled C-section at 38 weeks' gestation in order to decrease the likelihood of onset of labor or rupture of membranes before delivery.
For women with a viral load that's less than 1,000 copies/mL near time of delivery, a scheduled C-section is not routinely recommended. So, if your viral load is less than 1,000 copies/mL near the time of delivery, your choices for labor and delivery are essentially the same as a woman who doesn't have the virus, and you can have a vaginal delivery. The risk of perinatal transmission of HIV in women with an undetectable viral load (at 36 weeks gestation) is 1% or less, even with a vaginal delivery. No evidence is available to show that this risk can be lowered further by performing a scheduled C-section. Remember, a C-section is major surgery and has its own risk of complications, compared with vaginal delivery.
Under new DHHS guidelines, only women with viral loads of more than 400 copies/mL should be given IV zidovudine (AZT) continuously, even if your genotype shows resistance for this drug. The use of AZT is recommended because of its unique characteristics and its proven record in reducing transmission.
To help prevent transmission, your baby will be given liquid AZT immediately after birth and this will be continued (by you at home) twice a day for six weeks.
Unfortunately, women in the U.S. with HIV should not breastfeed their babies due to increased risk of transmitting the virus. Baby formula is a safe and healthy alternative to breast milk and there are many brands and options that are available to you. Also, while the risk is very low, HIV can also be transmitted to a baby through food that was pre-chewed by an HIV-positive mother (or caretaker). To be completely safe, babies should not be fed pre-chewed food.
There are two types of tests that will be performed on your baby to find out if he or she has HIV. The first is the HIV antibody test. All babies born to a mom with HIV will test positive for the first several months of their lives. This does not mean that they have HIV. Rather, it means that the baby has simply been exposed to his/her mother's HIV. The second test, PCR testing, looks for the virus and not just the antibodies to the virus. It is this test that can tell whether the baby has HIV or not. This test will be done during the first few days of his/her life.
The PCR test will be repeated several times on your baby. To know for certain that your baby is not infected with HIV, the baby must not be breastfeeding and must have two negative PCR tests, the first at one month (or older) and the second at four months (or older). Many experts confirm the HIV-negative status of the baby with an HIV antibody test at age 12 to 18 months. To be diagnosed with HIV, a baby must have two positive PCR tests.
Again, just because you have HIV does not mean you can't have a healthy pregnancy and baby. In fact, just this past year I had an HIV-positive patient who followed her regimen and had a healthy pregnancy, and an uncomplicated vaginal birth. She and her husband welcomed a healthy HIV-negative baby into the world. It can be done, and it is done by lots of women just like you every day. So, again, congratulations!
John Verna has spent his entire professional career providing health care to individuals with HIV. For the past three years, he has worked at Access Community Health Network in Chicago. John knows just how special (and scary) pregnancy can be, as he and his wife recently welcomed their first child.