What Did You Expect While You Were Expecting?

Contributing Editor
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Women living with HIV have been having babies since the dawn of the epidemic. Our knowledge of how to have a healthy pregnancy while HIV positive has increased radically since then; but even for today's HIV-positive moms-to-be, there's still not nearly enough information out there about what to expect when you're expecting. We asked a bunch of moms who've been there: What do you know now about having a baby while HIV positive that you wish you'd known at the time you were pregnant?

Andrea Williams, Brooklyn, N.Y., Diagnosed in 1993; Mom of three daughters

I wish I had known how stressful carrying a baby while HIV positive would be on my body. Before my pregnancy I had never taken medication. During my pregnancy I took meds to help stop the transmission of HIV to my child. Two months after my pregnancy I was given an AIDS diagnosis. I had become very anemic and developed severe fatigue. I had no idea that my bundle of joy would completely wipe me out and leave me in a position where I could barely care for her. There was also the emotional stress of accepting the fact that my baby could possibly be born HIV positive. The whole ninth month of my pregnancy I couldn't sleep; I worried about my baby's health, not mine. Thankfully, she was born HIV negative and I was able to regain my health. It's almost 16 years later and I am planning her sweet 16 party. I now know that I was blessed to be able to have my daughter, and would do it again.

Brooke Davidoff, Seattle, Diagnosed in 2010; Mom of Myles, age 2

I wish I KNEW I had HIV before being pregnant.

I'd have had time to read books about babies in my six remaining months of pregnancy, instead of having HIV research occupy my life. I'd have NOT been so moody, thinking about bringing a new life into the world and at the same time thinking I was dying. I'd plan a nursery room and have money put aside for my meds, which were more than $500 out of pocket monthly.

It would have been nice to know other HIV-positive women who were pregnant at the time so I didn't feel so alone.

Esmeralda, Oakland, Calif., Diagnosed in 1998; Mom of two teenagers and one toddler

There are a lot of things you learn along the way. It's amazing, the stuff you can learn. When I had my first baby, I panicked, you know? Now I know a lot more stuff, like the baby can listen from your stomach if you talk to him.

I was really scared at that time, having a baby and being HIV positive. Now I have decided to have a baby and I have HIV. It's really different.

Don't be afraid.

The baby can come out fine. If you're undetectable, if you're fine with your medicines, just talk to your doctor and say, "I want to get pregnant," and get pregnant. Have a baby, and have a great life.

Janine Brignola, Omaha, Neb., Diagnosed in 2006; Mom of Frederick, age 5

I would say the one thing that I didn't know when I was pregnant -- or that I found out to be true while I was pregnant, since I was diagnosed positive at approximately three months -- is that you can totally have a baby if you have HIV and not pass it to the baby.

I was so naive before about the virus. The strongest, most sincere emotion I dealt with during my pregnancy was guilt, thinking I had slept with the wrong person and because of my choice my baby would be born with HIV and have no chance at a normal life. Well now I know much differently: My son is 5 and HIV negative; I know a lot of people who were born with HIV that have normal lives; and NO ONE should be denied access to the medications that prevent passing the virus!

It just isn't the right thing, no matter what the bottom line is, because there is medication to prevent passing the virus to your baby; there's no excuse to not make it accessible.

Katie, Columbus, Ohio, Diagnosed in 2006; Mom to a 5-year-old son

I remember the heartache and guilt I felt when I was told that I would have to give my baby AZT every six hours for the first six weeks of his life. But as it turns out, he loved it! I'll never forget the face he made when I'd give it to him -- so cute! It was such a relief to know that I was helping him and he loved it!

Lolisa Gibson, Brooklyn, N.Y.; Diagnosed in 2004; Mom of Daryl, age 2

Before I was pregnant I never knew that having a Cesarean section was so painful. It's recommended for many HIV-positive women to give birth via C-section to increase the chances of the baby being born healthy. I heard stories of how painful it was from other women who gave birth that way, but nothing could have prepared me for the actual feeling itself. In the end the pain was all worth it to see my baby boy as a healthy toddler today!

Melissa Baker, Mechanicsville, Va., Diagnosed in 2007; Mom to twins Briana and Kymbra, almost age 16; Hannah, age 14; and Aliyah, almost age 2

I knew about the importance of adherence to my meds, the IV AZT during labor and the AZT every four hours for six weeks. BUT, I wasn't prepared for how I would ache emotionally and physically not being able to nurse. I had a point of reference from my first two pregnancies, when I was still HIV negative.

Shana Cozad, Tulsa, Okla., Diagnosed in 1993; Mom to James, age 21; Danica, age 11; and Mallory, age 9

Relax!!! That is the one thing I know now that I did not know then. I was happy yet nervous with my first (HIV) pregnancy. If I knew how to relax more and just enjoy my pregnancy, I would have had more time feeling good and less time being unnecessarily worried. I wasn't worried about HIV transmission because I knew our risk was 1 percent or less from mother to child. I was worried about the long-term effects of the medications on such as fragile young baby. I thought things like: "What if she's born with only eight toes?" or "What if her organs are failing because the meds are so toxic?" or "What if her brain function won't be optimal because the meds are so hard on the nervous system?" Lots of "what-ifs" ran through my mind about the power of these medications and what their repercussions might be.

And yet all of them were unfounded.

So ladies, if you are reading this: Please relax. Allow yourself to glow and enjoy their time of life in your womb. Your baby is safe and so are you!! Your baby will be more beautiful than you can imagine. The meds for baby after labor and delivery are manageable and the six weeks will fly by. I thank goodness I live in an area of the world where we as women and mothers have access to the medications. Because we must not forget there are women and mothers out there who do not. So breathe. Relax. Feel the sunshine on your face. You can be an HIV-positive woman and bring beautiful life into the world that is not HIV infected, rest assured. I've done it twice!!