My first question after recovering from the shock of being told that I am HIV positive was, "What are my child's chances of getting HIV from me?"
Five years ago the answer was: HIV is transmitted about 25% of the time nationally. (In the state of Georgia, that number was 13 to 15% of the time.) Shortly after my daughter was born, the use of AZT (Retrovir) was recommended as a result of a study (ACTG 076) showing that AZT can reduce the risk of transmission to 8%. In this study, AZT was given to women after 14 weeks of pregnancy, first during labor and then to the newborn for six weeks after birth. Today that risk is between 5 to 8% with the use of AZT and other antiretrovirals.
My next question was, "How is HIV transmitted to my child and when is my child most at risk?"
The answer to that question is the same today as it was five years ago:
During labor and delivery
Through breast feeding
For me, not being able to breast feed my child will always be a constant reminder of how I could have prevented all of this in the first place. That may sound as though I am being hard on myself. I have known about the risk around HIV since 1986, and never took heed because I never saw myself as someone who could be at risk of acquiring HIV.
After considering the risk to my unborn child, I then wanted to know the risk to myself. Five years ago, the risk to the mother was unknown, but since my t-cell (CD4) count was 733 at that time, my obstetrician felt that I could safely carry my child. I lost several t-cells during that pregnancy and dropped down to 588. After my daughter was born, my t-cell count also returned and I remained HIV-positive and asymptomatic (displaying no symptoms) until 1997.
Today for women who are asymptomatic, HIV does not appear to affect pregnancy. Over the years, pregnancy has not been shown to speed up the progression of HIV.
"How soon after my child is born would I have to wait to learn if she was HIV-positive or not?"
All children are born with their mother's antibodies. A child will take somewhere between 12 and 24 months to develop his or her own antibodies. Five years ago, it was through the same test used to check adults to find out if they are HIV-positive or not that they tested children. Therefore, it took 12 months before we learned that my daughter is not HIV-positive. Today a PCR (Polymerase Chain Reaction) test looks for the DNA of the virus. (This is not the same test as the viral load PCR test used in individuals who have already test positive for HIV.)
At four weeks of age, if an infant's PCR test result is negative, the test is 90% accurate. At six months of age, the test is 99% accurate. If the PCR is positive it means that the infant is most likely HIV positive. Since there are very few cases of false positives, this test is very accurate most of the time. If the infant tests negative for HIV, it may still test antibody positive for up to 18-24 months of age. This means that by approximately six weeks of age, I will know if the child I am carrying now is HIV positive or negative. This will be a lot less stressful than with my first child.
"Is there anything else that can increase the risk of transmission to my child?"
Five years ago we knew that t-cell counts were an indicator of my HIV progression. Higher t-cell counts usually mean the risk of transmission is decreased. Today we also know that the lower the viral load PCR count is, the smaller the chance of the infant being exposed to the virus. This is why my obstetrician and infectious disease doctors are both monitoring my t-cell and viral load results very carefully.
"Is there anything that might help to reduce the risk of transmission or will increase the risk any more?"
An elective C-section prior to the water breaking (rupture of membranes) can prevent the infant from being exposed to maternal blood and secretions while passing through the birth canal. This could reduce the risk of transmission to the newborn to less than 2%. Studies have shown that delivery more than four hours after the water breaks doubles the risk of transmission. It is recommended that, if you are considering a child or are pregnant now, you plan ahead and discuss the possibility of a C-section with your obstetrician.
Risk to the infant can be further increased before and during delivery with the use of the following procedures: amniocentesis, fetal scalp monitoring, internal fetal monitoring, PUBS (percutaneous umbilical blood sampling), urinary catheters, artificial rupturing of membranes, forceps and vacuum extractors. This does not rule out the use of these procedures. It should always be determined based on individual clinical factors.
Today we know that AZT monotherapy is not useful in the fight against HIV. Therefore, many women choose to use a combination therapy. There is very little information available about the use of other antiretrovirals, including protease inhibitors, by pregnant women. It has been strongly recommended that women who are pregnant not use ritonavir (Norvir) or efavirenz (Sustiva) during pregnancy due to some results from preliminary studies.
We do not know which child will or will not be HIV-positive. For that reason, I have made a point of getting good prenatal care and regular visits to my infectious disease doctors as often as needed. Sometimes the doctor's appointments seem to take up more time than I have, but in the long run I know that it will all be worth it.
Five years ago when I was diagnosed with HIV, I did not deal with it. Instead I bottled it up and focused strictly on my pregnancy and completing college. As a result, I became very sick from the mental stress that I was keeping inside. This stress caused me to become very ill and I began to vomit up to six times a day, and developed diarrhea that persisted for ten straight days, losing ten pounds in my first trimester. All of this became a very big threat to the survival of my unborn child and my own health.
Today I am more aware of the impact that HIV has on my own health and the risk to my partner and child. I felt very educated going into this pregnancy since I have spent many of hours in researching HIV and perinatal transmission. I felt that with all the research I have done, nothing could surprise me. I have since learned that no matter how much we know about HIV and perinatal transmission, we still have much to learn. During this pregnancy, I have had difficulties with tolerating my medications and with the flu, once again threatening my own health and that of my unborn child.
Many women who decide to have children or learn that they are HIV-positive after they are pregnant never have any physical difficulties with their pregnancy. However, the stress that goes along with the unknown factors involving the unborn child, living with HIV and disclosure make it necessary to seek out some type of support system. For myself, I have found support in educating myself by making use of our Treatment Resource Center, attending Operation: Survive! (the next one is on May 22 & 23), AIDS service organizations, speaking with my partner, therapist, friends, family, pastor and church, and attending support groups. Please call AIDS Survival Project to speak with one of our trained peer counselors if you are looking for support yourself or for someone you love at 404-874-7926.
The Current Federal Guidelines for the use of antiviral therapy in pregnancy are:
A woman who has never received antiviral therapy (treatment naïve):
A woman who is already on antiviral therapy when she finds out she is pregnant:
Women in labor who have never taken any HIV drugs:
For infants born to HIV+ mothers who have not taken any medications: