Since the beginning of the AIDS epidemic more than two decades ago, thousands of babies in this country have been born HIV-positive. These infants acquired the virus from their mothers while still in the womb or during childbirth. Many died at a young age. But an estimated 10,000 young people infected with HIV at birth are still alive around the nation.
New York City was once the epicenter of mother-to-baby HIV transmission. This week WNYC presents a series of reports about young New Yorkers who have survived with this awful inheritance. As Sharon Lerner reports, the usual travails of adolescence are profoundly complicated by having a life-threatening condition for which there still is no cure.
These are my babies. I have a Paddington bear and on it all the pins I’ve gotten from like world AIDS day and the camp I’ve put on his hat and on his jacket.
Siomara Cruz is 19 years old. In 1989, when she was 6, the New England Journal of Medicine came out with a report that the average lifespan of a child born with HIV was just over three years. Even back then, Siomara was beating the odds. Which isn’t to say that her family was spared.
My mother had six of us. And the two youngest has passed away so there are four of us that are living. The three oldest came out fine. It was the three youngest that came out sick.
Siomara’s sister, Tiara, died at the age of 5.
She was a little tough girl. She was a little loud mouth. Loud mouth. She wouldn’t take nothing from nobody. Siomara's little brother died the next year. And her mother died 4 years after that, when Siomara was 11. What’s it like to grow up watching your family members die from an infection you also have – wondering when the same thing might happen to you?
For someone to have lost three people that were really close to them because of HIV and AIDS to not ever think, oh my god, I’m going to die, it’s like people don’t believe it. People just think because someone has it, they gotta think, oh my God, I’m going to die. Tomorrow. Next week. Oh my God, two months.
Looking at Siomara, you’d never guess that she was infected. She’s taken medications to fight the virus since she was 12 and she’s never been really sick. She’s pretty and put-together. Her long, dark hair is perfectly blow-dried; her nails painted just so. Most days, she takes care of her sister’s children in the apartment they all share in Brooklyn’s East New York.
In the 22 years since AIDS was first identified, more than 1400 HIV-infected children have died in New York City alone. But hardly anyone seemed to notice.
Quieter still has been the story of the survivors - the kids snatched from the jaws of death by a combination of new AIDS medications and luck. Since no one expected them to live, no one anticipated the difficulties they would face growing up with HIV: the emotional toll of being diagnosed. The challenge of hiding your medications at a slumber party; worrying about how your best friend will take the news of your infection; dating…
Siomara: Dating. Sometimes I tell them from the get, look, this is what it is. This is what I have. If you’re going to be with me, you’re going to be with me. If not, leave now so my feelings don’t get caught up. And I don’t get hurt. I’m tired of getting hurt. Some of them stay, and some leave. And I’m like, if you’re going to leave, it’s your loss, not mine. Because I’m one of the sweetest girls out there. I’m a sweetheart.
Siomara has dated a few people, but she’s been sexually abstinent and, until recently, has had no serious boyfriends. Imagine having a sexually transmissible infection without ever having had sex. Imagine having to give your boyfriend that incredibly difficult news – even before he is your boyfriend:
Siomara Well, there was one situation where I was really scared to tell the guy because I really liked the guy but I was like, you know what, I should tell him now because if we do get a serious relationship going and I do end falling in love and he falls in love with me and I tell him, he’s going to be like our whole relationship is a lie. And I don’t want to be the blame for living a lie. I told him and he didn’t take it so well.
Rejection hurts. But for Siomara, the worst part has been living without a certain kind of love.
Siomara When I lost my mom, I lost someone that I really loved and that loved me unconditionally. And I’m at a point at my life now where I want to be able to love somebody like that. I want to be able to feel like someone loves me like that. I know my sister loves me, my family loves me, but it’s not the same as having that love that takes over your whole heart. And it’s hard. Now it’s hard.
The idea of having children appeals to Siomara. But it also terrifies her. Without drug therapy, an HIV-positive woman has a one-in-four chance of passing the virus to her baby. But by the mid-1990s, doctors had discovered a way to minimize this risk. Today most pregnant, HIV-positive women in the US are given the drug AZT before and during child-birth. Their babies take AZT right after birth. XX With this regimen, the risk of infection is less than 2 percent. Siomara could be fairly certain of having a healthy baby. Even so, she can’t stop worrying about what might go wrong: Siomara I do want kids, but I’m scared of having kids. Because I don’t want to have to deal with what my mother dealt with. Me and my sister always talk about it and I don’t know if she meant this serious or joking, but I had asked her one day if I wanted to have a kid, would she have it for me? And she said yeah.
Siomara's older sister, Yvonne, is 22. While Siomara sports a tongue stud and tends to her stuffed animal collection, Yvonne has a job and three kids. On a recent morning, Yvonne was still wearing her nursing assistant uniform while she cooked breakfast for her children. She also takes care of Siomara, but their relationship goes well beyond that:
[Yvonne, sister] My family keeps telling her she shouldn’t have any kids. And I tell her that I wouldn’t want you to for the simple fact that that baby might die before you and I don’t want you to suffer a pain like that, you know? Even though Yvonne has already been through three pregnancies – the first at age 13 – she is willing to do it again for Siomara:
Yvonne I was actually supposed to get my tubes tied and I haven’t done it. I had three, it won’t kill me to have another one. It’s difficult because everyone’s like, how can you part with something that’s lived in you for 9 months? And I say, hey, it’s for my sister.
For Siomara, motherhood is still just a thought. At this point, she’s still struggling with the basics. She’s a high school dropout with no job. Mostly Siomara spends her time babysitting her nieces and nephew and writing - poetry, plays … and the occasional letter to God.
Siomara: I don’t ask him why he gave it to me. I don’t ask him why my mom had to make the mistakes she did. All I ask him is to let me live a long and healthy life and help me help others. That’s all I ask of Him.
These days, no one even pretends to know the life expectancy of someone with HIV. But rather than focusing on how long Siomara and others like her will live, perhaps a better question is: what kind of lives will they lead? Will Siomara ever get a job? Will she get her degree? And more importantly, will she stay healthy? At least on one front, she has a new reason to be hopeful:
Siomara Yes, I have a boyfriend. He’s 18 and he’s in his last year of high school. Yes, he’s a younger man. Yes.
It’s still early, but Siomara feels her relationship with Andy could get serious. She gave him her usual speech about being HIV-positive. And for once, she felt good about what happened next.
Siomara He’s like well, that don’t change nothing. I still like you and I still want to be with you. And you’re still my baby. I never had that kind of reaction. So I feel because of his reaction, it’s going to be ok. I hope it’s going to be ok. But I’m at a point where I’m like I’m entitled to at least have one thing to go right in my life, rather than everything going bad.
For WNYC this is Sharon Lerner.