Sterilised without my consent - tales of HIV positive women

At the heart of most human desires is freedom; the liberty to have a choice over important life decisions. To be robbed of this right, can be dehumanising.

This is what Leah* went through while giving birth to her second child. During the caesarean section that delivered her baby, she lost the ability to ever get pregnant again. At the time, Leah was only 20 years old.

“I first learned that I was living with HIV when I was four months pregnant. It was difficult to process my status but my focus quickly shifted towards preventing my unborn child from contracting the virus,’’ she reminisces.

Being a woman with Grade Three literacy level, Leah placed her trust in healthcare professionals at Baba Dogo Hospital to ensure her child would be healthy.

“The nurse told me, ‘you are still a very young woman. Since you are pregnant and HIV positive, your CD4 count is very low. This is dangerous to you and your baby. Would you like to die and leave behind orphans?’’’ Leah recalls.

“I was also advised that were my child to be born positive, they would grow up and blame me for their status. I was afraid and ready to follow the doctors’ instructions,’’ she adds.

Leah was instructed to deliver through a caesarean section to prevent mother to child transmission and thereafter, use baby formula instead of breastfeeding. She was also informed that the procedure would cost Sh10,000 in a maternity hospital. Since Leah was a housewife while her husband was a casual labourer, she knew she could not afford that.

The nurse at the hospital gave her two vouchers worth Sh300, which she could use instead of paying the full amount.

Family planning

On her due date, she went to Marura Maternity and Health Nursing Home where she had been referred. Here, she saw her clinic card had been written ‘CS’ and ‘BTL’. She did not understand what the acronyms meant but trusted the healthcare providers.

“As I was lying on the operating table, the doctor asked me, ‘Leah, unajua unafungwa? (Leah do you understand that you are being sterilised)? I answered in affirmative thinking he meant a temporary form of family planning,’’ Leah adds.

It was only after she tried to get pregnant a year later, that she realised she had been permanently sterilised.

“I visited a local clinic where an ultrasound revealed I had a tubal ligation. The doctor drew the reproductive system on a piece of paper for me to understand that my fallopian tubes had been tied. I was devastated,’’ Leah reveals.

“When I told my husband, he became physically abusive and stopped providing for us. He later left me and took on another wife.’’

It was during a health talk with a local NGO that she learned her reproductive health rights had been violated, and that her status did not preclude her from her freedom to give birth. The organisation assisted her to put up a case, which was later decided by the Supreme Court of Kenya. The court ruled that Leah did not give informed consent to undergo tubal ligation. The court also found Marura Maternity Hospital liable for violating her right and awarded her Ksh3 million.

Following Leah’s case, nation.africa launched an investigation into the extent of the vice. Indeed, we found cases of women living with HIV who had visited clinics for antenatal care but were allegedly sterilised in exchange for postnatal care, baby formula and antiretroviral (ARV) medication.

The 2022 Kenya Demographic and Health Survey (KDHS) shows that women with primary level of education are at least two times more likely to be sterilised than those with secondary level of education. Additionally, poor women are twice more likely to be sterilised than rich women.

Carol*, a HIV positive mother of two, for example, learned she was positive after spending almost a year in and out of hospital with her firstborn child.

“My child was constantly sick and after a friend advised me that we should both get tested for HIV, I learned we were both living with the virus. The doctor told me to stop breastfeeding my child and use powdered milk,’’ Carol says.

“At the time, there were no ARVs in most Kiambu hospitals. I moved to Nairobi where a friend had told me that Blue House Maternity Clinic , a prenatal facility on Juja Road was providing mothers living with HIV with free medicine and milk,’’ she adds.

Her experience with the clinic went well until she got pregnant in 2010 and gave birth to her second child. As her due date approached, she was referred to Pumwani Maternity Hospital. Blue House Mathare clinic also promised to provide her with baby formula to feed her baby. She was given a voucher to get maternal care at the Pumwani Maternity Hospital at a subsidised rate.

“When my contractions began, I went to the hospital I was referred to. The attending nurse asked me how many children I had, to which I answered two. She then asked me, ‘Do you want the baby you are about to deliver to suffer like your second-born? Do you want them to be positive?’’ she recalls.

Carol says she was ready to take any measure to prevent the same thing from happening.

“The nurse then told me to prevent mother to child transmission, that should be the last child I gave birth to. I told her my husband and I planned to have more children but she insisted that I should get sterilised. I said I would consider other family planning methods,’’ she adds.

The following morning as she was being wheeled into theatre while in labour, the same nurse presented her with documents, which she signed. Carol thought she was approving a caesarean section since it is a surgical procedure.

“After the delivery, I was in a lot of pain and thought that was normal. It was only during the ward rounds that I heard my doctor say I was in so much pain because I had two surgical procedures; a caesarean section and tubal ligation. I was so shocked,’’ she says.

When she went back to the Blue House Mathare Clinic, she had to provide documentation that showed she had undergone a bilateral tubal ligation (BTL) to be provided with baby milk and ARV drugs. When her husband found out she was sterilised, Carol says he died by suicide.

“I had to see a psychiatrist after finding him dead in our home. It was only through a support group that I saw a psychiatrist to process what had happened,’’ she says.

Dr Nelly Bosire, an obstetrician and gynaecologist explains how women living with HIV should be treated with regards to family planning.

“At this point in time, there is little difference between a HIV positive and negative woman. Both are presented with the same options of family planning. There has been a lot of progress in reproductive healthcare,’’ she says.

Dr Bosire adds that tubal ligation is one of the family planning methods available for all women regardless of their HIV status.

“Tubal ligation is permanent and not reversible. It is essentially for people who have finished their family size. However, there must be a clear consent form that is signed just like any other surgical procedure,” Dr Bosire explains.

She continues: “You have not been given comprehensive reproductive healthcare if your provider has not counselled you on family planning. We encourage children spacing but it is still the woman's choice.”’

Wanja*, a mother of four, was diagnosed with HIV in 2005.

“My twin children had boils on their skin and it was only after I went to a hospital in Thika that I learned my children and I were HIV positive. I was referred to Blue House Mathare Clinic where they gave me ARVs and powdered milk for my children because I stopped breastfeeding,’’ Wanja says.

One child unfortunately died and she got pregnant again in 2010. She continued to access antenatal care at the same clinic.

The nurse at the facility advised her that after delivery, she had to get a tubal ligation in order to access powdered milk and ARVs after delivery. She complied because the institution was covering the delivery bills.

A nurse in the same facility advised Atieno*, another woman living with HIV, that taking hormonal family planning tablets would interfere with the efficacy of her ARV medication.

She was a casual labourer who relied on daily wages as low as Sh100.  “I knew I couldn’t afford a tin of powdered milk, which was at the time retailing for Sh800,’’ Atieno explains.

When she went back to the clinic after giving birth, the nutritionist told her that she would not get any milk or ARVs unless she got sterilised.

She was advised to visit Lions Clinic in Huruma where personnel from Marie Stopes were convening a family planning clinic. Here, the tubal ligation procedure was done.

“I did not undergo any counselling. I was simply taken to theatre and had a bilateral tubal ligation. I thought it would last for three months like my usual hormonal family planning injection. I was depressed after realising it was permanent. My husband abandoned me. I haven't thought of remarrying because who will marry a barren woman?’’ Atieno poses.

Dr Ferdinard Okwaro, a social anthropologist explains why men are affected by their wives’ sterilisation.

“The union of a man and women in Africa is very much male controlled. Most men see their ability to impregnate women as a form of power. It’s not so much about whether they have children or not, but men want to be in control of that process. Once the woman can no longer have children, that tool of control has been diminished. The whole essence of being a man in the relationship has been taken away. This makes them become abusive or abandon such women,’’ Dr Okwaro says.

He adds: “Even though the woman hadn’t consented to being sterilised, the man may not believe her. They would rather go elsewhere where they can still exercise their power, or exit the whole system by suicide.”

According to the National Family Planning Guidelines for Service Providers, a priority area for the government is integrating family planning services into other HIV health programs such as antiretroviral clinics, prevention of mother to child transmission and maternity services. One of the requirements for each service provider in any HIV prevention program, is comprehensive counselling and consenting to family planning services, including tubal ligation.

Mary* who underwent the same ordeal as Atieno*, says she was accessing antenatal care service at Pumwani Maternity Hospital. Here, she was advised to not breastfeed once she gave birth. While giving birth, the attending nurse coerced her into getting a tubal ligation. She also attended a medical clinic at Lions Clinic in Huruma where professionals from Marie Stopes performed a tubal ligation on her.

“I tried to tell her I would choose the family planning method I want, but she insisted that if I didn't get sterilised, the charity clinic would not give me milk after I gave birth. I was desperate because they were paying my medical bills so I agreed,’’ Mary recounts.

She didn’t tell anyone that she had been sterilised for fear of stigmatisation.

Our interviews reveal the women are more saddened by losing their fertility than their HIV status.

Dr Caroline Mose, a gender expert explains this. At the heart of the identity of a woman is her ability to bear children, especially in a patriarchal society. Although people joke about it, children truly belong to women. You can always debate the paternity of a child but never the maternity. This is why there is a lot of trauma when she is unable to do so,’’ she says.

Dr Mose explains that it is harder for women living with HIV to have that right taken away from them without their consent.

“HIV can be managed. You can take your medication, eat well and have a healthy HIV-free baby, but sterilisation goes to the core of who a woman is as a human being. To take that freedom away is, in essence, taking everything away from them because HIV has already taken a lot,’’ she adds.

Dr Bosire clarifies that most medical practitioners give pregnant women the chance to get a tubal ligation as part of the caesarean section as it covers two surgeries in one surgical procedure. This also reduces costs and surgery risks for women.

“Family planning information is just that, however, the power of choice remains with the woman. From a patient perspective, we offer a buffet of options,’’ she adds. The 2022 KDHS report, says 51 per cent of women indicated they gave informed consent on contraceptive methods. However, all women nation.africa spoke to indicated they were coerced or unknowingly underwent BTL.

“Years back, it was hard to imagine how women living with HIV would have children. Many were diagnosed while pregnant and the focus quickly shifted to prevention of mother to child transmission. The focus of care then was initiating them on ARVs, monitoring their viral load throughout the process to determine the mode of delivery and feeding after birth,’’ Dr Bosire explains.

When HIV was declared a national disaster, Dr Bosire says there was a violation of the rights of many women living with the virus. She adds that there was a lot of stigma attached to women living with HIV years back, and a lot of patients were mismanaged.

“The drive to coerce women living with HIV into tubal ligation was caused by specific provider bias and stigma. It wasn’t a national recommendation. Just because there was a disease we didn't understand, doesn't mean they were mandated to have a TBL.’’

Head of National Aids and STI’s Control Programme (Nascop) Dr Rose Wafula, tells nation.africa that HIV treatment shouldn’t be given in exchange of a service. She, however, indicates that in earlier years, there was a lot of stigma and inadequate training on how to care for women living with HIV.

“The imbalance in access to information between healthcare workers can also be blamed for such incidents. Today, we have the community including women living with HIV, involved in prevention of mother to child transmission. This is by educating them to be mentors,’’ Dr Wafula states.

Nonetheless, most medical practitioners are categorical there is nothing wrong with undergoing a tubal ligation whether the woman is HIV positive or not. However, it is important that the woman gives informed consent. “The woman should be counselled for contraception like everyone else. You have to educate her about her options and make them understand why some options are not good for them. Thereafter, she can make an informed choice,’’ Dr Bosire states.

“We are clear that what happened in the past was because women living with HIV were made to feel that if they didn't agree to BTL, then they could not get the help they required, or perhaps the healthcare provider intimidated them because they may not have been informed. That is illegal,’’ says Dr Bosire.

By the time of going to press, the High Court of Kenya found that Pumwani Maternity Hospital and Marie Stopes International had conducted tubal ligation procedures on the women without their informed consent. Consequently, each woman was awarded Sh3,000,00 to be paid by Pumwani Maternity Hospital, Marie Stopes International and Medicenes Sans Frontieres (MSF) formerly Blue House Mathare Clinic in various degrees.

Whereas the Judiciary has vindicated the women we interviewed for being robbed of their reproductive right to have children, many other women continue to suffer in silence.

Josephat Karanja, a Nairobi resident says that if he found out that his wife was sterilised, he would ask her to allow him to take another wife because it is not his fault that they can no longer have children.

Hardly Lugohe, another Nairobi resident, on the other hand, thinks that he would be okay with the situation if he and his wife already have children. Even though his wife would be unable to have children, he would understand that it is not her fault and thank God for the children they already have.

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