Living Positive
A Mother's Page · Una página de mamá
by Nancy Zamudio, Los Angeles

My story · How HIV is and isn't passed · Ask for the test · The medicines · Telling my family · Talking to my daughter · Our Thursday group · En español

My story

In March of 1994 I went to my first prenatal visit with a list of baby names folded up in my purse. I was thirty-eight. I'd waited a long time for this baby. The nurse asked if I wanted an HIV test along with all the other blood work, and I said sure, why not, the way you say yes to everything at those appointments.

Two weeks later the doctor sat down across from me instead of standing up, and I knew before he said a word.

People always want to know how. Here is all I'm going to say about that: I didn't know. That's the truth, and it's the truth for a lot of women.

Here's the part I want you to remember, though. My doctor, Dr. Flemming, had news that was only a few weeks old. A big study had just shown that if a pregnant woman with HIV took AZT during her pregnancy, and got it through an IV during labor, and the baby took it as a syrup for the first six weeks, the chance of passing the virus to the baby went way down, by about two-thirds. It was so new that he said, "Six months ago I couldn't have told you this."

So I took the pills. I prayed the rosary every night on the couch with my hand on my belly. And in October 1994 my daughter Miriam was born, loud and perfect. I couldn't breastfeed her, because the virus can pass that way, so she got formula, and her abuela got to feed her too, which nobody complained about.

Babies of positive mothers carry their mother's antibodies for a long time, so the regular test doesn't tell you anything at first. Miriam had special blood tests in her first months, and every one was negative. When she was a year and a half, the last test said it for sure. Negative. I took the paper home and put it in my Bible next to her baptism certificate.

This month Miriam started kindergarten. I walked her to the door. Five years ago I didn't think I'd get to do that.

How HIV is and isn't passed

HIV lives in blood and certain other body fluids. It's passed:

• through sex without protection with someone who has it,
• by sharing needles,
• from a mother to her baby during pregnancy, at birth, or through breastfeeding,
• very rarely now, through a blood transfusion. Blood in this country has been tested since 1985.

It is not passed by hugging, holding hands, kissing your child goodnight, sharing a plate or a cup, using the same bathroom, swimming in the same pool, coughing or sneezing, tears, sweat, or mosquitoes. You cannot get it from my tamales. You cannot get it from my pew at church. Please tell your tía.

Why every pregnant woman should ask for the test

Since 1995 the Public Health Service has said every pregnant woman should be offered an HIV test. Not every doctor does it. Don't wait to be offered. Ask. If you know early, there's medicine that can protect your baby. If you don't know, there isn't.

Testing is free and confidential at many county health clinics and community clinics, and some places offer anonymous testing, where they don't even take your name. Results usually take a week or two. Waiting is hard. Bring someone with you when you go back for them.

The medicines, and the daily work

When I was first diagnosed, there was really only AZT and a few drugs like it, and I'll be honest, I didn't expect to see Miriam start school. Then, in 1995 and 1996, the first protease inhibitors came out, and doctors started putting people on combinations of three medicines at once. Around the same time, viral load tests came into use, so your doctor could measure how much virus was in your blood instead of guessing.

I started a combination with a protease inhibitor in 1996. Within a few months my viral load was undetectable. That doesn't mean cured. The virus is still there, hiding. It means the medicines are holding it down, and that's how I mean to keep it.

The hard part isn't swallowing pills. It's the schedule, every day, forever, no vacations:

• One of mine is every eight hours, on an empty stomach, with a lot of water. I have a watch with three alarms. It goes off in church. Father has gotten used to it.
• I keep a plastic pill box with a little door for every day, morning and night, and I fill it on Sunday after Mass.
• Missing doses gives the virus a chance to get around the medicine. So I don't skip, and if side effects are bad, I call my doctor instead of quitting on my own.
• Every three months I get blood drawn for my viral load and my T-cell count. I write the numbers in a notebook.

Ask your doctor every question you have. Write them down before you go. You are not bothering anybody. It's your life.

Telling my family

I told my mother first. She cried for an hour, and then she went into my kitchen and made caldo de pollo, because that's what she does with fear. My sister Catherine came that night with her rosary and slept on my couch for a week.

Not everybody was like that. Some cousins stopped coming by. One friend from work asked if she could still use my coffee cup. That hurt, and I won't pretend it didn't. Some people think HIV is a punishment. It isn't. It's a virus. God doesn't send viruses to teach lessons.

What helped me: tell the people you trust first, one or two at a time, when you're ready, not before. Have the facts with you, because they will be scared too. You don't owe anybody your story. And it's your news to tell. Nobody else gets to tell it for you.

Talking to my daughter

Miriam turns five next month, so I tell her what a five-year-old can hold. When she asked about my alarms and my pills, I said: "Mommy has a germ in her blood. The medicine makes it sleep. You can't catch it from hugs or kisses, and you don't have it." She asked if the germ was sleeping right now. I said yes. She said, "Shhh," and went back to her coloring.

I'll tell her more as she gets older, a little at a time, always the truth. If you're wondering what to say to your own children, ask your doctor or a counselor at your clinic. There are people who help families with exactly this.

Our Thursday group: Las Valientes

Since 1997 I've worked as a peer counselor at a community clinic here on the east side, and every Thursday evening at 6:30 I lead a group for women living with HIV. We call ourselves Las Valientes, the brave ones, although most nights we feel more tired than brave. We speak English and Spanish, usually both in one sentence. There's childcare in the next room, coffee, pan dulce, and a box of tissues that we go through every week.

Whatever is said in the room stays in the room. We talk about pills and doctors and money and men and mothers-in-law, and sometimes we just laugh until we can't breathe. If you're a woman in Los Angeles who's positive and you feel alone, write me, and I'll tell you how to find us. You don't have to say anything the first time. Just come sit.

For the families of the women in my group, I've put the main points of this page in Spanish. Préstenle la computadora a su mamá.

Visitors since March 1997:

Write to me, in English or Spanish: [email protected]
Your letter stays between us.
Last updated Thursday, September 23, 1999