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HIV-positive mothers sterilised without consent

By Vicky Wandawa

Added 30th June 2018 03:47 AM

A study has revealed that many women in Uganda were sterilised without their consent for being HIV-positive,

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A study has revealed that many women in Uganda were sterilised without their consent for being HIV-positive,

She desperately wants another child. But she was allegedly sterilized, without her consent, when she gave birth to her first and only child now 10.

She claims the nurses told her that being HIV positive, more pregnancies would put her life at risk.

Annet Naluwooza, 32, got pregnant in 2006. Unfortunately, her husband fell ill and died. Seven months into the pregnancy, she tested HIV positive. 

Two months later, she reportedly went to Mulago national referral hospital, and gave birth to a baby girl, via a vaginal birth. However, she claims that shortly after the birth the female doctor who had worked on her allegedly said she had to take her to the theatre to have her uterus ‘cleaned’.

“After the surgery, I was discharged and went home with my baby. But I had a scar on my lower belly,” she recalls.

She continued bleeding vaginally, as expected of a new mother. However, seven months later, she was still bleeding. She went to the health centers around but none of the medical officers were able to figure out why she bled continuously. 

“I decided to return to Mulago, since it’s where I had given birth. I went to the maternity ward to try and locate the female doctor but I could not remember her face. I then explained to one of the nurses that since I gave birth seven months before, the bleeding had not stopped,” she says.

“She asked me for the date on which I gave birth and looked through certain records. Then she said my fallopian tubes had been cut to stop me from having more children, and perhaps there was a problem during the surgery,” she continues.

At that point, it was no longer about the bleeding. She realised she had another problem on her hands. She had allegedly been sterilized! She says she asked the nurse why she had been sterilized.

“She said that having children has a negative impact on a woman’s health in case she is HIV positive,” she was allegedly told. 

Confused, Naluwooza says she left the hospital in tears, without even addressing the issue that her taken her there in the first place—continuous bleeding.

Prior to that, Naluwooza says she never knew about permanent family planning methods. She went home and slid into depression. But still in denial, she opted for a scan, which confirmed the same. 

“I spent weeks crying. I would cry even the more each time I saw my HIV neighbours and friends amid their children, happy and healthy. I thought of suing the hospital but when I thought about the large sums of money I would need, I let it go,” she says.

Soon she started selling her body, as she had no source of income. Two years later while on the ‘job’, she met a man and moved in with him. He was aware of her sero status but not her infertility. It was all rosy until he asked why she was not conceiving. He asked whether she was using a family planning method. 

“When he found out why, he left me because he wanted a woman who could bear him children,” she says. She met another man four months later and the two lived together for four years until he learned that she was infertile. 

She has since given up on relationships and chosen to grow her vegetable sales, as well as take care of her daughter, nieces and nephews. 

“But now I don’t cry anymore, but occasionally, I just feel bad about what the doctors did to me. I hate Mulago and even if I am sick I cannot go there,” she says in anger in anger. When Saturday Vision asked for copies of any documentation as evidence of having once given birth at Mulago hospital, she said she had lost all documentation when her house in Bwaise once flooded.

“I used to live in a house which would fill up with rain water on a rainy day and I lost a lot of things amongst them the documents from Mulago hospital,” she says.

Women share their experiences
In a landmark report entitled Violation of Sexual and Reproductive Health Rights of Women Living With HIV in Clinical and Community Settings in Uganda, produced by International Coalition of Women Living with HIV in East Africa, (ICWEA), are powerful testimonies from 20 Ugandan women who said they had been sterilized without their consent.

This study took place between 2014 and 2015, in nine districts of Uganda. It involved a field survey targeting 744 women living with HIV selected from rural areas, small towns and urban areas.

Naluwooza is one of the women who shared their experiences in the report which examined violations of the rights of women of reproductive age living with HIV as they sought sexual reproductive health services in clinical and health care settings in Uganda. 

The report focused on forced and/or coerced sterilization. 72 out of 744 women in the study reported having undergone sterilization. Of these, 20 women had experienced violations of forced and coerced sterilization in clinical settings.

Whereas three young women were forced to abort by their relatives, six women had consented to sterilization because of the difficult circumstances they were facing. Most of the incidents took place at government hospitals and health centers around the country.

According to the report, most violations, especially coerced and forced sterilization, occur during childbirth by C-section where the health workers have access to women’s bodies and power to do what they feel is right for women living with HIV. 

Over 95% of forced/coerced sterilization occurred when women are undergoing C-section. A few of them were unaware that they had undergone sterilization until they failed to conceive years later. Other women believed that the procedure was a temporary measure, commonly referred to as “tying the tubes”, which could be reversed to allow them have more children.

Other violations in clinical settings occurred while their Antenatal (ANC) cards are being marked. All women reported different forms of marginalization and stigmatization by health workers including negative comments and questioning their decision to get pregnant given their HIV status, and delays in receiving treatment. 

The report also highlighted cases of coerced and forced abortion amongst HIV positive mothers by family and community members.

Activists speak out

Lillian Mworeko, the Executive Director of ICWEA says that some of the cases were as recent as 2014. 

“Women living with HIV in Uganda were being coerced or forced to undergo sterilisation despite scientific advances that have seen HIV positive women delivering children who are HIV negative,” she regrets.

Stephen Watiti, an HIV/AIDS activist disagrees with the practice of sterilizing women because they are HIV positive.

“That is too cruel,” he says. “Perhaps some of them think they are doing it in good faith but ethically, when a doctor realizes that a patient will actually be in danger should they try to conceive again, they should explain to the patients and let them make their own decisions, and in case they make a wrong decision and there’s a problem, you played your part.” Watiti notes.

He notes however that there are exceptional circumstances, such as a ruptured uterus, that may necessitate the doctor to sterilize the patient even before they consent because conception would 

“In such circumstances, document the details such that in case of a court case, you have a defence,” he warns. He further gave examples of circumstances under which HIV pregnant women are not advised to conceive, such as poor health, a high viral load, over the age of 45, low CD4 count and cancer among others.

Furthermore, Uganda adopted a policy called Option B+ for the elimination of mother to child transmission of HIV (EMTCT). According to the Ministry Of Health the new policy guidelines focus not only on eliminating HIV transmission mother to child, but also reducing mortality and morbidity among HIV positive women, and HIV exposed and infected infants. It was adopted from the WHO 2010 guidelines on use of ARVs in pregnant women irrespective of their CD4 count.

Mulago speaks out  

Enock Kusaasira, the spokesperson of Mulago hospital vehemently disagrees that a doctor at Mulago hospital would sterilize any patient without their consent.

“For such a procedure, we must have the patient sign consent forms. She is not telling the truth,” he told Saturday Vision.

He continues that the hospital is willing to meet the patient and get to the bottom of the allegation, by going through the hospital records. 

Medical council to meet over sterilization without consent

Dr Katumba Ssentongo Gubale, the UMDPC registrar, confirmed to Saturday Vision that they had received cases of people sterilizing women without their consent. 

“We are aware of these cases because we received a report about two days ago. It’s definitely not allowed for a doctor to sterilize a patient without their consent, we actually have a committee about to sit and look into this matter, and decide the way forward,” said Katumba.

The international picture

South Africa
Last year, South Africa’s Times Live website reported that almost 500 women in South Africa were robbed of the chance to have children after they were sterilized against their wishes because they were HIV positive.

Namibia
In 2014, the Supreme Court of Namibia ruled in favour of three HIV positive women after medical personnel at public hospitals violated their when it sterilized them without their consent. 

The battle began in 2009 when the Namibian Women’s Health Network, a chapter of the International Community of Women Living with HIV, uncovered the practice of hospitals forcing unwanted sterilization on HIV-positive women.

Kenya
Five HIV-positive women in Kenya are in court against the government and two top international NGOs, claiming they were sterilized without their consent. In 2012, a report titled Robbed of Choice, produced by the African Gender and Media Initiative, had testimonies from 40 Kenyan women who said they had been affected.

Below are other experiences from other women in the report who have undergone sterilization without their consent

Gauda Rose (not real name): Neither my husband nor any relative consented

I was sterilized in 1993 at the age of 25 when I had gone to the hospital to give birth. They knew I was HIV positive because my file was clearly marked HIV positive. I was not told anything about sterilization and I did not sign any consent form. Neither had my husband or relative signed any consent form.

When I gained consciousness, I heard the doctors quarrelling mentioning tubes. I became suspicious that something bad had happened but was not told what exactly had happened.

Later I waited for pregnancy but was unable to conceive. I tried following up my case with a doctor friend and we found that my tubes had been cut. I didn’t disclose it to anybody, only people started guessing that by this time I should have given birth but I think my mother knew about it.

Rita Mulondo
I was sterilized in 1999 at the age of 29 from a private clinic. My husband, from whom I separated, took me to a clinic for medical care. He told me that the doctor in that clinic was good and would cure the persistent abdominal pains I had. I used to hear from healthy talks about sterilization, it wasn’t new to me but I was shocked to learn that it was done to me.

No mother of one kid can ever suggest sterilization. I started imagining whether my husband might have been behind it. May be he had already found out that he was HIV positive and decided to malice me. During those days if you were HIV-positive you were not allowed to give birth but today things have improved and much has changed. That is how it all came about.

I wish it had not happened to me, I would give birth to another child. Since it hurts me, what about that child who is lonely, with no brother or sister? What about my current husband? I’ve not been able to give him a child. This situation equally affects both my child and my husband. I can’t deny the obvious; it keeps on traumatizing me; however, I cannot do anything about it.

Ida Nakijjoba (not real name): Was never told about the procedure

I was sterilized in 2008 at the age of 29 in a hospital. I went to the hospital to get treatment because my fallopian tubes were causing me pain and I had a bad discharge. The doctor decided to test me for HIV and found that I was HIV positive. I was in a lot of pain and the situation was bad.

They told me they were going to clean my womb. They took me to the examination room and asked me how many children I had. I told them I had four. They were using English. I did not understand what they were saying because I never studied English. They told me they were going to give me treatment.

Later when I gained consciousness I saw a plaster on my stomach, but because I was in great pain, I couldn’t ask questions. They gave me drugs to take and told me I would be fine and that if I get any problem I should come back.

After sometime, I wanted to reproduce but I was not conceiving and I went to another hospital where they told me my fallopian tubes had been cut. Yet the hospital doctor did not tell me that they had sterilized me. I felt very bad.

Mayimuna Naomi (not real name): Health workers removed my uterus without consent
My uterus was removed in 2007. When I got pregnant and went for medical check-up, the doctor asked me why I was pregnant. I told him I want to have a third child. The doctor said, “You people living with HIV at times annoy us because you understand your situations but you come to disturb us.” Then, I said to the doctor – I am very sorry, I have a problem and cannot go anywhere else. The doctor said that they would begin to decide on our behalf.

I was admitted and had the baby delivered by C-section. At that time I did not know they had removed my uterus. The time came when I wanted another baby because I had few children. I waited for one, two years but did not conceive. Then they directed me to Mulago, Ward 5, to check why I was not conceiving. That was where they told me that my uterus was removed!

I was hurt and wondered why the doctors did not inform me or give me an explanation. I tried following up the case but failed to get help or answers; my file disappeared. Though I knew my rights had been violated I did not take legal action. My husband and I accepted it and we know we shall never have another child.

Grace Chandiru
I got sterilized in 2009 at the age of 38 from Wandi Health Centre where I had gone to get my family planning injection (DEPO). While at the centre, I found the sterilization program which was introduced to me by a nurse. She told me that taking DEPO for a long time had side effects.

She advised me to go for sterilization. I didn’t request for it myself but opted for it after thinking about how I would suffer if I conceived again. I have a son who had been found HIV-positive. I was only told about injectables as the other options of family planning.

The nurse told me that after one week of sterilization, I would be okay but I wasn’t told of any dangers. I asked whether I wouldn’t be badly affected and I was assured that I would not. I did it secretly and informed my husband later.

Pricilla Nyanjoki (not real name): Got information from a caretaker that she was sterilized
I was sterilized in 2000 at the age of 32 years in a government hospital when I had gone to deliver my third child. The doctor did not inform me that he was going to cut my fallopian tubes or stop me from giving birth. I did not know what was happening to me because I had gone to give birth.

I knew that I had been sterilized when I had regained conscience after the operation. I asked the person that was around me and he told me that he had heard the doctors saying they were going to stop me from giving birth again.

It was hard to ask the doctor any question because I was in much pain. They just wrote things and most of the time they were talking in English, which I did not understand. I do not remember whether or not I signed because I was alone during that time and had no one to sign for me and I was experiencing severe pain. Since then I have never given birth.

Brenda Nakayiwa (not real name): I was never given an opportunity to decide
I underwent sterilization in 2008 at the age of 33 at a private hospital when I went to give birth. I had complications during the pregnancy. I was operated, and in the process my fallopian tubes were cut.

I was experiencing a lot of abdominal pain and sometimes I had difficulty urinating. They had earlier told me I had a tumour on my uterus. They wanted to operate me immediately but I refused, as I had no one to take care of me. I went back home and returned a few days later and they operated me.

They found that the baby was still alive, but unfortunately the baby died after 3 days. After I left the hospital I still had a lot of pain, which lasted for over a year. When I went back for review I met a new doctor who examined me and told me that my fallopian tubes were cut and I will never give birth again.

The doctor who had cut my fallopian tubes did not ask for my permission and neither for my mother’s consent because I was with her in the hospital; she did not sign and neither did my husband. I wasn’t given an opportunity to decide for myself. Even when I was leaving, they did not give me a letter that shows that I had been their patient. It has been hard for me.

Babirye Joy (not real name)
My uncle consented on my behalf I was sterilized in 2003, when I was 21 years old and it was done at the hospital. I was admitted at the hospital with fever and was pregnant and going to deliver.

They told me after birth that they would give me an injection so that I would not give birth until after five years – which I accepted. I did not know until later that I had been sterilized when I visited a nearby Clinic, because of frequent stomach pains. The doctor at the Clinic asked for the medical form and I told him it was with my uncle. I went and picked the form from my uncle.

It is at that point that I learned that my fallopian tubes were operated. My uncle had signed the consent form. Upon hearing that, I started shedding tears. This has greatly affected my health. I just struggle to accept the situation.

Kyakuwa Justine (not real name): My sister colluded with doctors
I was sterilized in 2010 at the age of 23 years in the hospital. My sister took me to the doctor when I was due to give birth. My sister met the doctor and they talked in private.

I did not request sterilization but my sister told me the doctor recommended it. I was not given any information about the procedure and I did not have an opportunity to ask any questions.

I found out later what was done to me when I went to Joint Clinic Research Centre for a check-up; the machine showed that my fallopian tubes were cut. I had not been told and did not sign a consent form.

Nanfuka Hope (not real name): My Aunt consented on my behalf
My fallopian tubes were cut when I was 27 in a government hospital. I was in a bad condition when I was pregnant. They then operated on me. I lost a lot of blood, so they decided to cut my fallopian tubes.

I did not know anything about it but my aunt knew. She decided for me. After the operation when I gained consciousness, she told me that they cut my fallopian tubes. She told me I should take care of my baby because I will never give birth again. I wanted to find out why the doctor cut my fallopian tubes without my permission.

I told them that I was not aware of what they had done. My husband abandoned me, in the house with my children, so I decided to live with my aunt. The decision that was made pains me so much because these days men want women who can give them children. It was wrong for my aunt to decide for me. Perhaps I would have suggested using better family planning methods.

Kamusiime Ivas (not real name): My husband colluded with doctors
I was sterilized in 2005, at the age of 39 in the government hospital. My husband told the doctors to sterilize me, without my knowledge, after I gave birth to my last born. I had talked about it before with my husband and he wanted me to do it but I refused because I wanted to continue with injections.

I even asked why he wanted me sterilized, whether he wanted to get children outside our marriage but he said it was fine if I did not like. I don’t know when and how they sterilized me; I came to know it later after 4 years when I developed abdominal pain and went for a medical check-up.

I felt bad and wondered why my husband had not informed me. Did he want to get children with other women? I did not take any legal action because it was already done. I consoled myself because there was nothing else I could do.

Nyakishiki Brenda (not real name): Coerced into sterilization
I was sterilized in June 2013 at the age of 33 in a government hospital where I had gone to give birth. Due to many complications I experienced during pregnancy and childbirth that led to miscarriages and still birth I was advised to undergo sterilization for fear that I would die. I did not want it [sterilization] but because of complications, I had to do it. After giving birth, my child died immediately.

I was in a very critical condition, the doctors talked about sterilizing me. I did not like it but doctors told me that my condition would result into death if I did not sterilize, forced me to accept to be sterilized. The doctor informed me about the procedure and that after sterilization I would never conceive again.

It is only when he took me to the theatre that he told me that he had forgotten to give me the form to sign. He gave me the form to sign which I signed. I was aware of other family planning methods such as injector plan, IUD, pills and condoms but I was not given a chance to decide on other options of family planning methods.

They only told me that my uterus was weak and that if I continued giving birth I would die. When they told me the repercussions if I didn’t sterilize, I had to agree. At first I feared because I used to hear that when they sterilize you, you become weak. I have received counselling that has helped me to come to terms with sterilization.

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