Dignity denied

"In Chile medical staff pressure HIV positive women to not have children or chastise them for getting pregnant, and sometimes, like in my case, sterilise women without their permission."

Eight years ago, November 5th, was the worst and the best day of my life. After nine months of worrying and apprehension, I learned that I had delivered a healthy baby boy. At the same time, I also received the devastating news that during my caesarean section I had been sterilised and that I no longer would be able to have children. But I hadn’t given the doctors, nurses or anyone on the hospital staff permission. There had been no discussion, no requests, no information shared, nothing.  I was floored by this news. I couldn’t understand why they had done this and especially without asking me. A few days later,  I went home from the hospital filled with joy for the birth of my new beautiful son, but also a profound loss of security and self.

It wasn’t until a year later that it became clear to me that this medical “care” was abuse and that the hospital had seriously violated my rights. Early on in my pregnancy I was diagnosed as HIV-positive during routine pre-natal testing. In my country Chile, information about HIV/AIDS is scarce and misconceptions are plenty. It isn’t talked about and no information is readily available. There are people who  think that touching or even looking at someone with HIV puts them at risk of contracting it. As a result, people living with the virus are regularly mistreated and face a significant amount of discrimination, even among doctors and in hospitals. At the time of my diagnosis, I assumed that HIV was an automatic death sentence. The doctors did nothing to disabuse me of this. A nurse told me that if I took some medication, there was a good chance that my child would be born healthy, but beyond that nothing. I was never told how to take care of myself during the pregnancy. The issue of sterilisation certainly was never raised.

Today is a bitter reminder of my delivery night. The Center for Reproductive Rights, an international legal advocacy organization in New York, and VIVO POSITIVO a Chilean organization working on behalf of people living with HIV, have released a new report Dignity Denied which documents the ongoing abuse of HIV-positive women seeking reproductive healthcare in Chile.  Sadly, as the research shows, my experience is not uncommon. Medical staff pressure women to not have children or chastise them for getting pregnant, and sometimes, like in my case, sterilise women without their permission.

Two days before my delivery, I checked into Curicó Hospital in preparation for my scheduled caesarean section. But my water broke early and the doctor originally scheduled to deliver my baby, who had experience delivering children to HIV-positive women, was not on duty, so I was turned over to another doctor. The nurses placed me in a room by myself instead of taking me to the maternity ward for fear of me infecting the other pregnant women. One nurse scolded me and asked, “how can you be so irresponsible to have children when you have HIV?” Shortly after midnight, I was finally taken into the operating room, but the staff there made it clear that they were afraid to treat me, since I was HIV-positive.  Once I was in the operating room, they gave me anaesthesia and I immediately fell asleep. I had no awareness of the surgery, and I only woke up once, after the procedure, when I learned my baby was a boy. It wasn’t until I was in the recovery room a few hours later that a nurse broke the news to me that they had also given me a tubal ligation.

I have since learned from VIVO POSITIVO that our law requires that sterilisations be authorized in writing and that the purpose of this requirement is to make sure women’s reproductive rights are respected in line with Chile’s international obligations. I never signed any agreement. I never received any information that I would need to even make a decision about whether I wanted a sterilisation.

I also know now that the risk of transmission from HIV-positive mothers to children can be greatly reduced by using breast milk substitute, which is why the government has medical guidelines on the prevention of mother-to-child transmission. My son was born HIV negative and is completely healthy. A year after his birth, his paediatrician congratulated me, saying that he never thought the child of an HIV-positive mother could be raised to be so healthy.

About a year after I was sterilised, a representative from a local support group for people living with HIV/AIDS walked up to me while I was waiting for anti-retroviral treatment in the hospital waiting room and encouraged me to join their support group.  Initially, I did not think that they would actually help me. I could not believe that anyone would care about a person with HIV.  Before connecting with them, I assumed that the doctors knew what was best, and although it was horrible to have been sterilised I assumed that what they had done to me was legal.  But VIVO POSITIVO educated me on what my rights were and helped me see that hospitals should respect people living with HIV: that we are entitled to the same medical treatment as anyone else.

After connecting with VIVO and the Center for Reproductive Rights, I decided to fight back as a woman – to make sure that this does not happen to other women. I am a 28-year-old from a rural area, but I know now that this abuse also affects women in cities. It is widespread and the discrimination has to stop. I started to look for an attorney with the help of VIVO and the Center. It took months to find an attorney who would take my case because no firm wanted to be associated with an HIV-positive woman.  We eventually did locate lawyers who were willing to take my case. They actually ended up losing clients who did not want to be represented by lawyers who “defended a person with AIDS.” My attorneys filed a suit against the doctor who sterilised me, but the trial court dismissed it. We appealed the decision, but we were unsuccessful.

Last year, with the help of the Center for Reproductive Rights and VIVO POSITIVO, I filed a petition with the Inter-American Commission on Human Rights, taking the case to an international level.  The commission monitors whether countries are complying with their international human rights obligations. My hope is not only to push the Chilean government to take action to prevent other women from having to go through what I went through, but to prove the doctors and nurses who mistreated me wrong, to prove that one can be a good mother irrespective of whether one is HIV-positive or not.

Eight years later, my son is my everything, my rock. I treasure every minute with him and am so thankful that I have him. As he has gotten older, he often asks me whether he can have a little sister or brother and why not.  His questions are very hard to hear because I do not even know how to begin to tell him what happened.  I will never forget how my fertility was taken from me.  To this day, the experience contributes to a depression, a loss of security and self-confidence. But it will not keep me from fighting for justice. Hopefully, my case will remind the Chilean government and the Inter-American Commission that this treatment of women living with HIV is unacceptable, that we have just as much of a right to be mothers as anyone else.

Francisca is a pseudonym for this author who lives in Chile with her 8-year-old son and husband.