Mother’s journey from HIV infection to medicare and breast-feeding a healthy son

Evelyne Simaloi is not new to the limelight. The first time she was featured in the media she had declared her HIV positive status and was taking herbal drugs that were said to cure Aids.

After close to a year of not seeing any considerable change in her health, she reluctantly opted to go for anti-retroviral (ARV) drugs which she was initially opposed to.
Within a month of taking ARVs her viral load went down and her CD4 cells count had increased ten-fold.

“Before I started taking the herbal medication my CD4 count was 54, after two months it had moved to 94. But three months after starting to take ARVs, the count was well over 700,” she said.

Nairobi-based Simaloi was diagnosed with HIV in 1998 and doctors told her that she had only five years to live, which made her plunge into a life of alcohol and drugs.

“At that time I was young and had just applied for a job at a hotel and one of the requirements was that I undergo a medical examination. That is how I got to learn that I was HIV positive. When I confronted the man whom I lived with he admitted that he had infected me,” she said.

Ms Simaloi said that using protection during sex was rare in the 1990s. After being infected, Ms Simaloi said, she opted to stay constantly high to temporarily forget her predicament. Soon she parted ways with her partner.

DENIAL

Five years passed and still death did not visit her, another year lapsed while she was still in denial. In the seventh year, she realised that she needed to take control of her life.

That was after she was raped while heading to a chang’aa drinking den and nine months later she gave birth to a baby boy.

“I became very spiritual and believed strongly that God had healed me, but my son kept falling sick. When we both got tested we were found to be HIV positive. Rather than embark on treatment I went in search of herbalists who said they could heal us,” she said.

Last year another man came into Ms Simaloi’s life. “I felt as if I was growing old and that I needed to have a second child, so I told my partner and we took the necessary precautions. He took Nevirapine for 28 days within which time I tried to conceive,” she said, admitting that she had hoped to have a girl.

As fate would have it, her second conception was confirmed when she went for an ultrasound test.

Believing that her friends and family were aware of her HIV status, Ms Simaloi told them that she was expecting another child.

“The moment I went public there were mixed reactions; few congratulations and very many condemnations. People would ask me how I could be so selfish since I already had a HIV-positive child.

‘‘Some said that I was being mean to the children, many cautioned me against breast-feeding so as not to infect the baby. There were all sorts of reactions and some scared me,” she said.

When her bundled of joy arrived last April, Ms Simaloi stuck to her decision to exclusively breast-feed the baby as both were under treatment.

This is what the doctors advised her to do and what the World Health Organisation advocates.

The road was, however, not smooth. When she took the baby for testing to determine whether he had been infected, the HIV positive results from an Elisa (enzyme-linked immunosorbent assay) test almost broke her heart.

“I thought I had infected my baby but doctors told me not to worry as the test was mainly detecting my antibodies which were present in his blood. They said a PCR (polymerase chain reaction) test would give a more definitive answer and they encouraged me to continue breast-feeding him,” she said.

The second scare was more real, Ms Simaloi’s nipple began to crack and the possibility of infecting her son became more palpable. One of her friends introduced her to a children’s nutritionist in the hope that she would help Ms Simaloi abandon breast-feeding all together.

The nutritionist advised her to continue breast-feeding her son as the cracks were not open wounds, adding that her baby was not in any danger.

After five months Ms Simaloi opted to introduce her son to porridge in order to satisfy his growing demand for food.

“I noticed that with the porridge he would be able to sleep for at least three hours in the night before I could give him milk,” she explained.

When her son’s results from the PCR test came out negative, Ms Simaloi went around declaring them to all including doomsayers.

According to new guidelines issued by the World Health Organisation (WHO), an HIV positive woman can breast-feed her baby in collaboration with medics.

She must, however, breast-feed exclusively and she or her newborn need to receive ARTs at the same time.

SPONSORS WITHDREW

Ms Simaloi had been advised against giving him water during the first six months for fear that it could damage his digestive system.

Out of curiosity, Ms Simaloi took her son to a private clinic for the second testing after she introduced him to semisolid foods. The results remained negative, much to her joy.

The outspoken Simaloi said that she used to have a show aired on a community radio station that helped create awareness about Aids among Kibera residents but sponsors withdrew it.

“I used to go on air for a one- hour show once a week, but when I became very sick in 2011 the sponsorship was withdrawn. Right now I run two anonymous groups on Facebook, one for HIV positive mothers and another for people living with Aids. It is a closed group and one has to send me a message to allow them to join,” she explained.

Among some of the fears that she helps mothers living with HIV overcome are those of infecting their babies, the trauma of finding out their positive status while expecting, doubting their ability to exclusively breast-feed as well as managing discordant relationships.

“Research has proven that it is safe for a mother living with HIV, and on a full combination of ARVs, to breast-feed exclusively for six months in order to build the immune system of her child. If you miss breast-feeding the baby will be sickly and you will always be in hospital with him,” she said.

Ms Simaloi said that she plans to ensure that by 2015 there are zero infections for members of her group. Those who know their HIV status do not infect their partners, and children born to positive mothers can turn out healthy and HIV negative, she said.

‘‘One can be able to live well when they get tested, know their status and accept it,’’ she said.

Even with the progress that has been made to reduce the prevalence of HIV in the country, stigma against people living positively is still rife. This is further fuelled by lack of adequate staff to create awareness of the pandemic.

It is on this basis that Mothers2Mothers (m2m), an international non-profit organisation dedicated to preventing mother-to-child transmission of HIV, trains Mentor Mothers.

These are mothers living with HIV who are trained to work alongside medical professionals in under-staffed areas.

In an interview with the Business Daily, the organisation’s Country Representative, Ms Nicole Sijenyi Fulton, said that they train the mothers on how to exclusively breast-feed their children for six months and continue with supplementary feeding until the child is one year old.

They do this while continuing with the ARV protocol recommended by their doctors.

REPLACEMENT FEEDING

“There are some regions where leaders have embraced replacement feeding for positive mothers and it becomes hard for health workers to advocate for exclusive breast-feeding.

At times many of the women believe that the breast milk is not enough for their baby even though mixed feeding is not recommended,” she said while explaining some of the challenges that mentor mothers experience.

Apart from mothers’ fears over the amount of milk produced for their babies, Ms Fulton said that some women resist exclusive breast-feeding.

“For them it is not about the perceived lack of sufficient milk, they fear that if they exclusively breast-feed their children HIV negative mothers who begin weaning their children at about four months would start suspecting that they are positive. This is something that all stakeholders must address through vigorous awareness creation,” she said.

This story first appeared in the Business Daily