Born Free

Lynnea Lawson found out that she has HIV when she was seven years old—she had acquired HIV at birth. Her HIV status was outed when she was a teenager and she had to switch high schools due to serious stigma. Her self-esteem was low. She thought she was ugly and worthless. For a while, she even adopted an “alter ego” that had nothing to do with HIV/AIDS and enabled her to live a second life in denial of her diagnosis. Now, at 34 years old, she is both an HIV activist and the proud mother of a daughter who is HIV-negative. Lynnea—like the knowledge that we have today about HIV and pregnancy—has grown tremendously. 

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In the 1980s and early ’90s, most women living with HIV were actively discouraged from having children due to fear, stigma, and concern that they would not live long enough to raise their children or would transmit HIV to their babies. Moreover, some women living with HIV who became pregnant were pushed to terminate their pregnancy—an option that many ignored, and thus had to fight for their right to bear their child. Some were pushed into having cesarean deliveries (C-sections) to help prevent HIV transmission during labor.

In 2020 (and since the 1990’s), women living with HIV can and do have babies who are virus free, not only in the U.S. and Europe but also in Africa and other continents. However, there are guidelines to prevent vertical transmission (also known as mother-to-child transmission, or MTCT):

•           If the expectant mother is not on HIV therapy, she needs to start right away.

            •           She should take a regimen that contains two nucleoside reverse transcriptase inhibitors (NRTIs, or nukes) plus one other HIV medication from another drug class

            •           Treatment should be individualized for each mother, taking into account her circumstances, potential side effects, opportunistic infections, or other co-morbidities (most especially hepatitis)

•           If the expectant mother gets her viral load down to undetectable—and keeps it there—the risk of transmitting HIV to her unborn baby is virtually nonexistent.

•           If the expectant mother is already taking anti-HIV medication and her viral load is undetectable, she should continue taking it as long as it is safe for both mother and child (see sidebar about dolutegravir).

•           Women who are pregnant and living with HIV can have vaginal deliveries! C-sections are no longer recommended but can be scheduled electively two weeks prior to the due date.

•           Mothers who are living with HIV in the U.S. and Western Europe should not breastfeed. (Guidelines are different in some resource-limited countries in the southern hemisphere, where the risk of using contaminated water for formula is more dangerous than HIV due to the risk of other life-threatening infections such as cholera, dysentery, and other water-born illnesses.)

•           Newborns take liquid pediatric doses of AZT for 4–6 weeks after birth as an added preventive measure (the time frame depends on whether the mother took HIV medications or not).

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Growing up

A Los Angeles native, Lynnea is a seasonal tax preparer and self-described “lifelong AIDS activist.” When she became pregnant, she followed the guidelines listed above, and her five-year-old daughter, Nae’lyn, is HIV-negative.

The very first HIV test (ELISA) was approved in April 1985, but Lynnea was born the month before, so neither she nor her mother were tested. As she got older, one of her sisters, Keisha, was very inquisitive and kept asking their mother why Lynnea had so many medical visits. “I was the only one out of four kids who kept going to the doctor and having blood drawn.” Keisha was relentless with her questioning and their mother, Patsy, eventually revealed the truth although “it wasn’t in my mother to disclose.” Patsy told Keisha that Lynnea had HIV but instructed her not to say anything about it to her sister. Lynnea remembers being outside playing while Keisha was with her, keeping quiet while she was deep in thought. Finally Keisha asked, “’Did you ever wonder why you kept getting stuck with those needles?’” Lynnea said, “I had never thought about it until she brought it up. I had never asked. I had complete trust in my mother. If my mom said I needed to take this medication, I knew I’d be okay.”

Keisha’s next words were: “You have HIV.”

“I had no idea what that meant. I just saw HIV in passing. Like Ryan White and Magic Johnson.” But it still “stuck out to me like something bad. Magic is gonna die because of it. The only thing I thought was that I was gonna die too.” When Lynnea saw her mother, she asked, “Why didn’t you tell me I was gonna die?” Patsy’s response? “As long as I’m okay, I will take care of you. I have AIDS and AIDS is worse than HIV.”

Patsy did not know that she had HIV while she was pregnant with Lynnea or while pregnant with Lynnea’s little brother Raymond, who was born both premature and HIV-positive. Patsy took him home and “prayed that he would live long enough to wear the new baby clothes that were bought for him.” Baby Raymond did wear the baby clothes, but died shortly after. “His life was short so that ours could be long. No telling if my mom ever would have been tested for HIV. Then she got all the kids tested.”

Already a shy child, Lynnea became even quieter, although she dreamt of one day becoming a model and being in fashion shows. But when stigma hit, it hit hard. A “random kid” at Jefferson High walked behind her and said, “Someone told me you have HIV.” He used his drumsticks to drum on her backpack and sang “HIV girl” behind her all the way down the school hallway. She went home in tears and talked to her mother. “After that, I didn’t go back. When that happens, you don’t want to go back to school. I wasn’t learning anything anyway. I had to leave Jefferson and transfer to Fremont High.” At Fremont, Lynnea kept to herself, not sharing her HIV status or her secret plans to be a model. “I was a loner and very shy with low self-esteem. I was a sponge and liked what everyone else did and didn’t speak to anyone. Anyone else’s opinion was my opinion.” To this day, she has no idea how the “random kid” at Jefferson found out her HIV status.

After Fremont High, Lynnea intentionally took on an “alter ego” named “Angel Doll.” “I didn’t know how to act and didn’t think I was good enough. I didn’t matter. I never mattered. I copied what everyone else did and didn’t have my own opinion. I always had this double life kind of thing. I was a wonderful person in one setting, in the next setting I just wanted to be a normal person.” That is, a person without HIV. Lynnea was interviewed by the Los Angeles Times about HIV/AIDS and the story identified her by her real name. “If someone Googled my name, it [the story] would come up. So, I just stopped telling people my real name.” And Angel Doll was not shy like Lynnea. Angel Doll was “very outgoing, flirtatious, spontaneous, and free.” This alter ego existed until her late 20’s when Lynnea “intentionally killed off Angel Doll. It was very freeing. I had realized that I could have my own opinion.”

All grown up

Once she felt freer to be herself, she came up with an idea called “Positively Beautiful,” her passion project. When Lynnea was younger, she figured that she would never be able to model. She decided that no one thought that she was beautiful because of “all of the horrible things” that were said about people living with HIV/AIDS (PLWHA). After her “Angel Doll” years, she realized and accepted that HIV was “never part of her outward appearance.”

In 2006, thanks to a friend from the Los Angeles HIV/AIDS community and the National Association of People with AIDS (NAPWA), Lynnea co-created and participated in her first fashion show. The Positively Beautiful fashion show took place during the Positive Youth Institute as part of the Ryan White National Youth Conference. The show took place during one of the many conference-related social events that attendees were invited to. Lynnea gathered together PLWHA who were willing to model and gave them t-shirts. The models decorated their own shirts with words that described themselves that “they wanted other people to see.” The PLWHA models then walked the “Ryan White runway.” But the ultimate goal of Positively Beautiful is to have a fashion show that includes models who are both HIV-positive and HIV-negative—and the audience won’t know who is who. “They will just know that they all look good.” Lynnea was finally given a beauty pageant sash as part of her peer award from the Los Angeles HIV/AIDS Women’s Task Force. But she still wants the full runway fashion show, even as a mom.

Desire for a child

Eventually, Lynnea started thinking about motherhood and having her own child. “I was at a point in life when I was almost ready to have a kid.” But her desire to be a mother intensified when one of her best friends became pregnant and asked her to be godmother. Lynnea’s friend said, “You have a health condition that won’t allow you to be a mom, so I’m gonna share my baby with you.” After the baby girl was born Lynnea felt that “it was the nail in the coffin. I loved that baby so much and wanted one so badly that I would have picked one up at the store if I could have.” Thanks to her activism and education about HIV, she knew that she could potentially have a child who was HIV-negative.

When the home pregnancy test turned out positive, she “got what I wanted. I was happy and also very nervous. Can I do this? Am I about to ruin someone else’s life?” In addition to worries about her mothering abilities and HIV, she worried (and still does) about having an African American child in the U.S. “What about having a child in this world? Where, if you are black, you are not encouraged to be 100% who you are. I have limited options. I’m not married or traditional, so things are not set up in an ideal way. I don’t own a home, have money, have a good career, or a husband. And I’m not in a position to not worry about money.“ Also, her brother, Danny, had served nine years in prison for robbery as a result of his involvement with an “urban gang violence thing.” He spent his 21st birthday in prison, but Danny is no longer incarcerated and is “on the right track now with a good job.”

Prevention

While pregnant, Lynnea took Odefsey (entricitabine/rilpivirine/tenofivir alafenamide). Labor had to be induced and the clinic gave Nae’lyn a pediatric dose of AZT in an IV drip. And the AZT doses continued via bottle when Lynnea took her Nae’lyn home. “I cried. That was the hardest part. I know how bad AZT is and I had to give it to her right after birth.” And of course her sister Keisha was full of questions: “What are you giving to the baby? Are you sure about that? Do you know how bad it is?”

Patsy had chosen not to give Lynnea AZT when she was a child because she didn’t trust it. She thought it was harsh and toxic (1980’s dosing of AZT was, indeed, too high and caused severe side effects). And watching Dallas Buyers Club at home alone while giving Nae’lyn pediatric AZT certainly didn’t help. The film got in her head. “I worried about AZT’s reputation. I worried that it would cause harm and side effects.” She had to make sure to focus on the outcome and what her doctors told her, both throughout her own life and during her pregnancy and labor (Lynnea receives her own HIV medical care at the University of Southern California’s Maternal Child and Adolescent/Adult Center for Infectious Diseases and Virology [MCA] and went for prenatal care at MCA as well). After all, “they had many years to get it right.” Lynnea turned to her faith for strength and support. “I had to pray about it. I prayed, ‘God, if this is not going to be good, please make the bottle [containing AZT] spill over.’ But the bottle never spilled over and I prayed that prayer every day. I would still cry as I gave it to her. It was a process.” She told her daughter, “Mommy is only giving this to you because it will make you be healthy.”

Lynnea took Nae’lyn to MCA approximately every two months, for wellness checks, immunizations, and HIV tests. The nurse at MCA (who had also taken care of Lynnea when she was a child) didn’t specifically mention the HIV testing or the test results. “They didn’t tell me, and I didn’t ask. It was just normal blood work.” When Nae’lyn was one-and-a-half years old, she tested negative for the last time. “That time, they told me that this would be the final HIV test and that she had tested negative until now. I was pretty confident that she would really be HIV-negative.”

When the test results came back, Lynnea “wasn’t excited and it wasn’t a cause for celebration. It was like ‘tell me something I don’t know!’ I took the steps and did the research. It was good! My self-esteem is not the best but I had confidence in that moment. And that moment of confidence carried over into other aspects of child rearing, like my abilities as a mother.”

Growing up, Part 2

Currently, Lynnea and her story are part of an interactive exhibition at UCLA’s Fowler Museum called “Through Positive Eyes,” and Nae’lyn is thriving in kindergarten. “If you ask Nae’lyn if her mom has HIV, she might say ‘yes.’ She’s been around while I do my advocacy work. She has heard my story. I don’t alter the world for my child. I explain it to her the way that it is. I let her experience it as it is and explain it in a way so that she can understand it for herself.” And Lynnea is not worried that her daughter will feel ashamed that HIV is part of the family. “I have given her enough information to banish stigma.”

Asked what she wants for her daughter, Lynnea says, “I want my daughter to be a well adjusted, happy, and healthy person. Whatever that looks like for her, well, I’m fine with that. I want to expose her to everything in the world. I want to encourage her to find her own gifts—and a lot of people don’t get that opportunity.” Compared to Lynnea, Nae’lyn is most definitely not shy. “She is a ball of fire but still sensitive to the needs of others.”

Recently her daughter deliberately missed her lunch break to check in on her kindergarten teacher who was suffering from a migraine and having a tough day. When Lynnea concludes her portion of “Through Positive Eyes,” she always finishes with the same description about her daughter: “She’s a happy, healthy, HIV-negative, little girl. She’s sassy, spunky—quite the opposite of me as she’s not shy at all! She sings at church and she remembers everything. She’s very loving yet full of attitude. She wants everything her own way. She’s a handful.”

And now that she has become a mother, what’s next for Lynnea? “I want to use my voice to fight HIV. I let myself be an example. I want to teach others how to be an ally to the HIV community. And how to be a friend to us. There is no place for judging or shaming.” And of course she still wants to work on her passion project, Positively Beautiful, and that real runway show. With models of all shapes, sizes, and serostatuses. 

The dolutegravir issue

Since 2018, there has been conflicting and concerning information about Tivicay (dolutegravir) and pregnancy and neural tube defects (NTDs—birth defects of the brain, spine, or spinal cord). According to results from the Tsepamo study in Botswana, there were five cases of NTD out of 1,682 deliveries to women who took dolutegravir. On October 25, 2019, the Food and Drug Administration (FDA) approved new labeling to dolutegravir and medications containing it: Triumeq, Juluca, and Dovato. The new labeling states that HIV-positive women should not take dolutegravir or any drugs containing dolutegravir starting at the moment of conception through the first trimester. According to the FDA, dolutegravir can be used in the second and third trimesters of pregnancy, but only if “the expected benefit justifies the potential risk to the pregnant woman and the fetus” and if the expectant mother decides to take it. (see Briefly.)

Another potential way to prevent vertical transmission?

Each year, 180,000 infants worldwide acquire HIV via breast milk. However, using water potentially contaminated with cholera or dysentery in baby formula is dangerous. Additionally, the use of formula instead of breast milk can be very stigmatizing for new mothers who are living with HIV, especially in cultures where breastfeeding is the norm. Results of a new study show promise that may change this infection paradigm. Published on November 4, 2019 in the Journal of Infectious Disease, the study indicates that use of broadly neutralizing antibodies (bNABs) may help reduce MTCT transmission. bNABs are a type of antibody that can recognize and block HIV from entering healthy cells. They may also activate (turn on) other white blood cells to help destroy HIV-infected cells. (see page 32.)

This was a phase 1 safety study of a bNAB called VRC01. Babies who were exposed to HIV during pregnancy in the U.S. and Africa were given a single dose of VRC01 subcutaneously (under the skin). Infants who were being breastfed were given 40 mg after birth and then 20 mg monthly. Anti-HIV medication was also given to all babies in the study. Other than some mild-moderate skin reactions (reddening at the injection site), the experimental drug was deemed to be safe in the study infants. More research is needed to see if VRC01 is effective in preventing HIV transmission.

Michelle Simek has worked in HIV/AIDS for more than 20 years.  She currently works at the UCLA Center for Clinical AIDS Research and Education (CARE) and is a popular HIV/AIDS presenter, both locally and nationally.  In her downtime, she is an avid reader and concertgoer and proud mom of Baxter, her five-year-old rescue cat.