From Diapers to Disclosure

PLUSWomen’s Words: Robyn, Nicole Hicks, Rhonda Stevens, Sylvie Olivier

WE ALL KNOW that living with HIV is a challenge. Throw in motherhood, and life becomes a roller coaster. For the past decade, I’ve experienced the ups and downs of positive motherhood, from diapers to disclosure. Throughout this time, I’ve found support from many wonderful women, some who are no longer with us and others who continue to be my pillars of strength. All of these women have children and all of these women have stories. Mine is only one of them

A pregnant pause

When I found out I was pregnant in 1992, HIV was the furthest thing from my mind. I was about to become a mom — in my case, a single suburban mom with a great career and supportive family. What was on my mind was preparing for the baby — making sure I had an appropriate place for us to live, stocking up on diapers and reading about “what to expect when you’re expecting.” At nine months, I decided to upgrade my life insurance policy. The insurance company sent a nurse to my home to take blood and urine samples. When I asked what they were testing me for, she said, “I don’t know, but they test for AIDS.” With that, she slapped an AIDS brochure on the coffee table and asked me to sign a consent form.

Later that month my son was born. The test never crossed my mind again until February 1993, when my mom and I were watching an AIDS documentary on TV. I said to my mom, “I haven’t heard from the insurance company and they’ve cashed my deposit cheque, so I guess I don’t have AIDS.”

March 13, 1993. I picked up the mail and there was a letter from the insurance company. It explained that, due to health reasons, they couldn’t accept my application for life insurance. I was directed to contact my doctor in 10 days to find out why. I knew the news must have been bad, but not knowing exactly what it was, I called the insurance company and asked for my test information. Of course, they wouldn’t give it to me. I asked them to fax it to my doctor’s office and they finally agreed. When I spoke, by telephone, to the nurse in the office, she told me she’d received the fax and that I couldn’t get insurance because I have HIV.

I had many emotions to deal with. I felt very guilty that my family would have to go through this. I felt confused and powerless. It was as though I’d lost complete control of my life. I was afraid: Afraid of what would happen to us. Afraid of what people would think. Afraid of notifying my previous partners. I was curious about how I was infected. I wondered if I would die. And I was angry. Angry with the doctor who had once told me that I wasn’t in a high-risk group. And just plain angry.

These are many of the same emotions that other women have upon diagnosis. But I really couldn’t take the time to deal with these emotions. I had to concentrate on the baby — who was now 3-1/2 months old — and reduce his risk of transmission and get him diagnosed.

First, there was the process of switching him to a bottle, because I’d been nursing him. On the day of my diagnosis, I learned that HIV could be transmitted through breast milk, so I stopped nursing immediately. The next step was to get him diagnosed. At the HIV Clinic of the Toronto Hospital for Sick Children, I met with a highly skilled staff of doctors and nurses, dentists, psychologists and social workers. It was heartbreaking for me to see my tiny baby poked and prodded for blood.

Two months later, my son was diagnosed with HIV. When the doctor told me the news, I didn’t ask too many questions. I didn’t know what to ask. I think I was in shock.

Mother’s little helpers

MAY 1993 — Today was the worst day of my life. I found out the baby has it, too. I was so sure he wouldn’t. I was so sure it couldn’t get any worse. As soon as the doctor came in the room, I knew. He didn’t even have to say a word. I couldn’t help it, I started to cry. The baby laughed. It was almost as if he were saying, “Don’t worry, mom.”

The first few months after our diagnosis, the stress was overwhelming. I bordered on a nervous breakdown and left work on disability. I spent most of my time fussing over the baby and attending doctors’ appointments for one or the other of us. During this time, a concerned family member brought me some resources about HIV. I started to research the disease I was facing. I realized that if we were going to survive I’d better pick myself up and find out as much about this virus as I possibly could. I contacted my local health department, which referred me to Voices of Positive Women. I attended my first support group about four months after my diagnosis. I couldn’t believe the number of women there. Much of what they talked about went over my head and mostly I just sat there quietly and cried.

Later that summer, I attended the first camp for HIV+ moms and their kids, sponsored by Sick Kids Hospital. We moms met several times to discuss issues that we felt were important to us as parents. We all found the experience to be very rewarding and decided that we’d try to continue our newly found support group in some form. In the fall of 1993, the first support group for moms met in my grandmother’s living room! Some women travelled up to 100 km to attend. With the assistance of Voices and The Teresa Group, our support group met once a month. We discussed such issues as who will care for our children if we get sick or die and how to talk to our kids about HIV.

Facilitating the moms’ support group was very therapeutic for me. It allowed me to get support while volunteering my time and it made me feel like I was part of the solution. While I’m no longer involved as an active member of the moms’ support group, it continues to thrive as a vibrant part of Voices’ programming. In fact, similar programs are now available in other communities. Volunteerism and activism have become a very important part of my personal support and resource system.

Mum’s the word

NOVEMBER 1998 — There are days, most days, when it’s like he doesn’t even have it. He gets on the bus in the morning with all the other children, plays soccer before the bell and takes his seat with the rest of the class. At lunch he eats his sandwich and treat but leaves the apple for later. He goes to gym class, computer club and baseball practice — all the things that “normal” kids do. So, then, why isn’t he treated normally? Why does he have to hide? Why do there have to be secrets? I thought it was OK to tell. I never thought people would still discriminate, especially not with a child. But I was wrong. I was so wrong. And, believe me, that’s hard for me to admit.

Disclosure is a very difficult and personal issue. I chose to disclose to my son naturally over time. As a positive child, he was used to taking medicine and seeing me take it. He was also used to going to the doctor’s office. At about age 5, he began to ask questions like: “Why do I have to take medicine and my cousin doesn’t?” and “Why do I have to get an IV and other kids don’t?” I answered him in partial truths. At first, I told him he had special blood. Then, that he had a virus. He asked how he got it. That’s when I told him he got it from me. Eventually he wanted to know the name of his virus. He now takes an active part in his own health care by sorting his medications and discussing symptoms and test results with his doctors.

While disclosing to kids is tough, asking them to keep a secret is tougher. There are times when I doubt my decision to tell him. It was heartbreaking to explain to my son that a lot of people don’t know you can’t get HIV from being friends and that they may be afraid to play with him.

Positive moms, whether or not their kids have HIV, often face stigma and fear discrimination for themselves and their children while participating in regular family activities.Most parents don’t tell schools and recreational clubs that they have HIV for fear of alienation. One school didn’t want me to drive in a carpool because the principal was afraid I’d have an accident and bleed on the children. Clearly, this was discrimination, and I was furious. Unfortunately, it took a call from a lawyer for her to see the error of her ways. She later notified me that I was allowed to drive other students in my vehicle. However, this incident strained our relationship and made it uncomfortable for me to communicate with her about my son’s progress in school. I didn’t enroll him there the next year.

Another public school decided they’d begin using latex gloves to serve pizza on the day I was scheduled to volunteer for that task. As soon as the new rule was announced, I knew why and my heart sank. I could feel the tears well up in my eyes. Afterwards, I confronted the principal, who said that the health department had recommended the gloves and that it had nothing to do with me. I asked her if it was just a coincidence that they started doing it the day I was scheduled to volunteer. She didn’t say a word. Again, the relationship became strained and uncomfortable. Several other discriminatory scenes took place at this school. Eventually I filed a human rights case against them, but it was unsuccessful. I felt it was necessary to change school districts and do what most parents do: not disclose.

Moms of HIV+ kids have added decisions around disclosure. Should I tell the babysitter, school or boy scouts? What about sports coaches? How do you handle medications for a sleepover? At first, I was afraid to leave my son with anyone who didn’t know he has HIV, so most of the time I’d leave him only with family. I’ve since taught my son to keep his body fluids to himself and not to touch anyone else’s. He only goes on sleepovers to friends and family who know he needs medication. As for schools, sports and scouts, sure, sometimes I’d like to tell, but I’ve realized that, for the most part, people really don’t need to know and that, even in 2003, they often react poorly.

Mother knows best

JUNE 2000 — I really didn’t feel like walking him to school today. Not that I didn’t want to, I just didn’t feel like it.

Mothers with HIV, like most moms, tend to put their own needs second to the needs of their children. The kids need to be fed, the kids don’t have clean clothes, the kids have swimming lessons, and so on. In addition, meeting with various doctors around the city about the health of one’s HIV+ child leaves little time and energy for positive moms to do the same for themselves.

Sometimes I just don’t feel well. For me, one of the hardest things about being an HIV+ mom is going on with your day and trying to act like all is OK when you really feel like you’ve been run over by a truck. There are days I don’t want to make breakfast or lunch and walk to school. Although my son knows I have HIV, I don’t want him to see me sick. I don’t always hide how I feel, just enough so he doesn’t worry too much.

When I decided to start HAART in the fall of 1996, I wasn’t prepared for potential side effects. I experienced nausea and vomiting for several months, followed by kidney complications. With a 4 year old at home, I was run ragged. I seriously considered stopping the meds for a while so I could cook, clean and care for my son. Eventually I was able to get some help at home to get me through the roughest times.

Like all HIV+ women, I wrestle with treatment decisions for myself. In addition, I must consider choices for my son. One of the most difficult decisions I ever made was to give my child a medication that had previously sent me to the hospital with an adverse reaction. Such choices are further complicated by the small amount of research data available on which to base informed treatment decisions for women and children.

I’ve only begun to touch on the issues that HIV+ moms and their families face. Family life with HIV is a different experience for everyone. Various factors, including culture, relationships, geography and finances, compound our problems and affect our choices about disclosure, support, treatment and the future — choices not only for ourselves but also for our children. As a positive mom, I’ve faced a myriad of daily challenges, but they’re very often rewarded with a simple “Thanks mom, you’re the best!” …and that makes the struggle more than worthwhile.