Two HIV+ women share the struggle to protect their babies
When Antonia was diagnosed with HIV a precise worry entered her mind. Were her dreams of becoming a mother dashed? She was repeatedly assured that advances in treatment made it possible to drastically reduce the risk of passing the virus on to a baby. So after two years on antiretroviral drugs she raised the question of starting a family with her doctor.
“They looked at my blood count and viral load to find out if it was safe, not only for the baby but for my partner as well. I am part of a discordant couple which means that my husband doesn’t have it. There were a lot of things to take into consideration,” she recalls. “We had a ‘normal’ sexual experience and luckily, we got pregnant on the first try.”
Susan’s situation was more tenuous. She didn’t disclose her HIV status to her partner for two years. During that time she insisted on condoms, saying that she wasn’t ready for children. When she started treatment and mustered the courage to tell him about her illness, he unreservedly agreed to continue the relationship. Despite his newfound knowledge, however, he sometimes resisted using condoms. A few months later she became pregnant.
“When I went to the clinic and told them they did a test and that confirmed it. I started to cry and tell them I think I was going to have an abortion. The doctor said ‘you could have this baby and the baby could be perfectly healthy’. That was the best thing I could have heard,” she remembers. “I thought, ‘I am going to have this baby and make sure everything is perfectly healthy with this child. I will do everything in my power to make sure what I have, this child don’t get’.”
But for both women shifting from dedicated HIV healthcare at the Medical Research Foundation to antenatal clinics was a nerve-wracking experience.
“Only my husband, the people at MRF and I knew at that time. I remember when I went and handed the letter (about my HIV status) to the nurse at the clinic I looked at her attach it to my file. I dreaded when they would call my name. The way it’s arranged you’re not sitting too far from anyone else and another person might hear the nurse talking. She said things like ‘You know the risk you are taking?’ You could see she had an attitude about it. It was really frightening for me but I remember wanting my baby to be healthy at all costs,” Antonia says.
“There are very nice ones you meet at times,” Susan reflects. “Then you meet those who don’t have anything uplifting to say. They tell you ‘Why you decide to have this child?’ or ‘Why you didn’t abort the child?’ Why this and why that. They don’t try to encourage you to do the right thing… so the child would be born negative. It is a hard thing to deal with. Some mornings I used to feel like ‘I have to go and deal with these people again?’ I would sit in the back and feel this distance with the nurses. Seeing the difference in the way they correspond with the rest of patients… it was hurtful to me.”
The women persevered month after month, completing their treatment regimens and giving birth to their babies. But they wouldn’t know whether the children had HIV for some time. In the interim they had to balance the rigours of new motherhood with a strict routine of precautionary treatment.
The state provides free replacement feed for the babies of HIV positive mothers for up to a year. But abstaining from breastfeeding isn’t just about having baby formula in the cupboard. The women soon found that the social pressures on women to breastfeed left them either making excuses or feeling inadequate.
“When you have a baby and you are HIV positive the… doctors advise you that it is not right to breastfeed but when you have a baby everybody expects you to. Most people who are inquisitive might ask why I not nursing. I make up some story like ‘I breastfeed the baby in the night or ‘I will do it when I home’ or ‘I not making milk’. I just find some excuse. It is very hard to explain the situation so it is better to give a short answer and forget about it,” Susan says.
For Antonia it was painful to hear about the benefits of breastfeeding—from health to bonding—and know that she would always be exempt.
“It makes you feel like less of a woman or less of a mother,” she admits. “The nurses have to include the women who are HIV positive in this whole bonding with your baby thing. There are ways you could do it. I have.”
She consciously held her babies close, giving them her warmth and her scent. She made eye contact and talked as they drank from the bottle. She reports that they’re healthy, happy and close to their mother.
The good news is that all of Susan and Antonia’s children have been tested and none of them have HIV. Negotiating safe sex with their partners and preventing more pregnancies, however, are another story.
Susan and Antonia share much more about the highs and lows of dealing with disclosure, safe sex, contraception and pregnancy in the UNAIDS Caribbean podcast “Positive and pregnant”. Listen to their stories in their own words.