HIV Positive Mentor Mothers Spread Lifesaving Knowledge

By Miluka Gunaratna

In 2008, when Corazone Aquino was 22 years old, she became pregnant and went to the Bondo District Hospital for her first antenatal care visit. As part of routine procedure, pregnant women are screened for their HIV status during this first visit.

That was how she learned the devastating news: She was positive for HIV.

In Kenya, this is not unusual. Very often, women discover their HIV status only when they go for their first antenatal care visit.

At the time Aquino, an orphan and the second oldest among her 6 siblings, had many responsibilities weighing on her as she had performed well in school and was the only sibling to have completed Form Four (high school). In many ways, she was a role model to her siblings and they hoped that she would be able to provide for the family in the absence of their parents. Their father died of a stroke when Corazone was in Form Four and her mother a year later from tuberculosis.

Bondo District had no program in place to provide Corazone with guidance during her pregnancy and to reassure her that, despite her positive HIV status, she could still give birth to an HIV-negative child. Still, she was determined to follow medical advice to ensure that her child did not end up being HIV positive as well.

Corazone was successful in giving birth to an HIV negative son. Without proper psychosocial support and care, few HIV-positive pregnant mothers in Kenya are as fortunate as Corazone. According to the 2012 Kenya AIDS Indicator Survey (KAIS) the overall HIV prevalence in Kenya is 5.6%.

One of the biggest health and development challenges Kenyans face is the transmission of HIV/AIDS from mother to child. This transmission can occur in utero, during labor and delivery and through breastfeeding. The Kenya National AIDS/STI Control Program (NASCOP) estimates that 37,000 to 42,000 infants are infected with HIV annually due to mother-to-child transmission. Many mothers think that giving birth while being HIV positive is a death sentence for the child. They are not aware that, with proper medical advice, it is possible to give birth to an HIV-free infant. If correct treatment protocols are followed, there is a less than a 5% chance that the baby will be HIV positive. Thus, transmission of HIV from a mother to a child is highly preventable and not just based on luck.

Corazone was asked to bring her child back to the hospital for a PCR test after 6 weeks to diagnose the child’s HIV status. A PCR test (Polymerase chain reaction test) can detect the genetic material of HIV and identify the presence of the virus in the blood within 2-3 weeks of infection.

Babies need to be tested for HIV with a PCR test as their blood will contain the antibodies of their HIV positive mothers for several months. This test can determine if the babies in fact have HIV themselves. A rapid antibody test, which produces results in under 30 minutes, is unable to make this differentiation. When Corazone brought her son to the hospital to be tested she hoped to learn the boy’s HIV status that very day. No one had told her she would have to wait a month or more to get the results. She waited anxiously, hoping for the best.

When the results eventually came, it was negative. However, Corazone was asked to stop breastfeeding at 3 months after her son’s first PCR result tested negative. According to Corazone, this significantly affected her son’s health. In many developing countries which have a high burden of disease and limited access to clean water and proper sanitation, breastfed children have a much higher chance of survival than those who are bottled-fed. The Kenyan Ministry of Health, following World Health Organization guidelines, recommends exclusive breast feeding with antiretroviral drugs for the first 6 months of life for a baby born to an HIV-positive mother.

Regardless, Corazone learned from all of her experiences. In 2009, a year after her son was born, a friend directed her to an advertisement posted by the Catholic Medical Mission Board. This organization was establishing a prevention-of-mother-to-child-transmission (PMTCT) program in Bondo and was looking for candidates to hire.

Corazone applied and was selected as one of the top candidates to be a Site Coordinator for the program to assist and counsel pregnant HIV mothers. Corazone had become what she termed a “pioneer mentor mother” for the Bondo community. Eventually, this program was absorbed by the mothers2mothers (m2m) program, which started providing care and services for HIV-positive pregnant women in Bondo in March 2011.

m2m’s program in Kenya started operating in 2008 with the goal of helping reduce the transmission of HIV from a mother to a child. The program selected their sites of operation based upon the prevalence of HIV, choosing the highest prevalence areas to work in.

The results of the KAIS survey conducted in 2012 showed that Nyanza Province in the western part of Kenya has an overall HIV prevalence of 15.1% − twice the average for the country. Bondo Town has an HIV prevalence at least three times as high as the national prevalence, and was thus chosen as an m2m program site. Corazone’s experience led her to be appointed the Mentor Mother Team Leader.

Bondo District Hospital currently has 3 Mentor Mothers working under Corazone. They provide support and guidance to pregnant, HIV-positive women and advise them on how they, too, can give birth to an HIV negative baby if they follow proper medical advice. The Mentor Mothers also conduct weekly support group sessions at the hospital where these mothers can voice their concerns in a friendly and safe environment. Learning from the struggles of fellow HIV-positive mothers in the community helps these women to realize that they are not alone.

The support group meetings always end with a balanced meal provided by m2m. This lunchtime gathering allows the mothers to mingle with the Mentor Mothers and approach them in a casual manner to talk about their problems. Corazone explains that eating the same food together with their clients helps to put them at ease and breaks barriers. It also provides the clients an opportunity to chat among themselves and get to know each other. Corazone says this helps to build a sense of community support, one which she didn’t have when she was diagnosed.

Joyce Aloo, the m2m Regional Manager for Nyanza and Western regions says they seek certain criteria in potential Mentor Mothers.

“We don’t just pick anybody,” Aloo said. “We pick the mothers who have gone through the prevention-of-mother-to-child-transmission program or are currently undergoing this training with us.”

She explains that the mentor mother’s personal experience serves as an asset when counseling clients by allowing these clients to see Mentor Mothers living successful lives.

In other words, Joyce Aloo says, “The Mentor Mothers become positive role models to many of the HIV positive mothers.”

This is because they are often among the few women who are willing to openly discuss their positive HIV status.

Aloo says, “We are empowering the very poor and marginalized persons on the ground. We pick someone who is trainable and can express herself and is someone who we can train to go and teach support group members and other mothers.”

The ideal candidate should also have a child who is no more than 18 months old, although in some cases having a child of 2-3 years old is acceptable. This is to ensure that the Mentor Mother is still fresh from the training she received as a client and can impart her knowledge to the clients properly. Once selected, a Mentor Mother receives a monthly salary equivalent to Kenya’s minimum wage requirements and will typically serve in the role for a year to 18 months.

The hope is that by the end of this period she will have gained valuable work experience (which she would not have otherwise received) and will be motivated to use her new skills to seek employment elsewhere. Some women may go on to work for other organizations in the area.

A mother is enrolled in the m2m program when she comes for her first antenatal care visit and is found to be HIV positive. From there on she receives continuous support throughout her pregnancy and is able to complete the program once the child is 18 months old. The first test to check if the child is HIV positive is conducted when the child is 6 weeks old, the second at 9 months, and the third/final test at 18 months. Once a child has successfully tested negative on all three occasions the mother is ready to graduate from the program. If the child ends up being positive, the Mentor Mothers continue to provide her with support.

Since m2m’s inception in Bondo District, 1,643 mothers have been mentored from March 2011-Jan 2014. 1615 mothers gave birth to HIV negative babies while 28 gave birth to positive babies. Therefore, 1.70% of the babies born during this time period were confirmed positive for HIV.

The World Health Organization states that, in the absence of intervention, transmission rates range from 15-45%. Further, encouraging mothers to deliver in facilities is also crucial to preventing vertical transmission. As of Jan 2013, 78% of m2m clients in Bondo have delivered at the Bondo District Hospital. The 2008-2009 Kenya Demographic and Health Survey states that the national average for facility delivery is 43%.

But much remains to be done.

Fifty-seven percent of Kenyan mothers give birth at home without the assistance of a health care professional. Further, the stigma of being HIV positive often prevents mothers from seeking treatment for fear of being judged. Its effect on their psyche was apparent when one of the HIV-positive mothers currently enrolled in the m2m program asked us if we thought she looked “different.” Clearly, the virus has the ability to attack not only a person’s immune system, but also their mind. It is therefore imperative that people living with HIV receive proper support to help build their confidence to lead normal lives.

The m2m program is attempting to provide this much-needed psychosocial support to its clients. The Mentor Mothers in Bondo conduct weekly support group sessions for HIV positive pregnant mothers and there is good attendance (about 35 women). However, the attendance for the couples support group session held once a month has been rather poor with only around five couples showing up. Fathers need to play an active role in supporting their spouse, but once again stigma plays a huge factor in preventing these men from showing up at the couples’ sessions.

One of the husbands we interviewed had this to say when asked about how he thought the m2m program in Bondo could be improved.

He broke into a huge smile and said, “It is time for a mentor fathers program.”

Perhaps that is the way forward. Women should not have to be the sole bearers of the burden of trying to give birth to an HIV-free child. Fathers have an important role to play too.

Corazone certainly had no support from her husband who eventually left her with their son in 2012. Neither was she able to have the support of her parents as both of them had passed away. Looking back with the knowledge on HIV she now possesses, she believes even her parents may have passed away due to HIV as tuberculosis is an opportunistic infection and a stroke may be a result of HIV.

Corazone is now happily in a new relationship. Although her new partner is HIV negative, she has shared her positive status with him and he has accepted her for who she is. He is also aware that she passionately works for the m2m organization providing her services to other HIV positive women.

Corazone has now been working with m2m for over 4 years and points out that without donor funding there would not be a Mentor Mother program.

“The passion for helping mothers saving babies is still in me and it will not end even if the program ends today,” she said. “I think I’ll be an ambassador in the community and continue to help mothers.”

m2m is providing technical assistance to the government and partner organizations to implement a national Mentor Mother program. Once the Kenya Mentor Mother Program (KMMP) is fully implemented, it will place Mentor Mothers at health centers throughout the country in order to provide many more HIV-positive pregnant women and new mothers with essential health education and support.

KMMP is modeled in large part on m2m’s Mentor Mother program. It is the centre piece of Kenya’s new national eMTCT (elimination of mother-to-child transmission) framework, developed to eliminate new cases of paediatric HIV by 2015. m2m is funded by many partners and individual donors. The program’s largest donor is the US Agency for International Development (USAID). Some of their other partners include: UNICEF, UK Department for International Development (DFID), the Bickerstaff Family Foundation, Chevron, Johnson & Johnson, Merck & Co.