Keeping Children Healthy in Face of Adversity

The number of death before the age of 2 years among HIV-infected infants is still high.

Adinda Silitonga and Rustini Floranita
Ibu XXX profile
UNICEF/2019/Fauzan

28 November 2019

“I want to share my story, but I’m more comfortable to do it at the Health Centre. My family just recently move to this neighborhood, and I don’t want the neighbors get suspicious when they see I have so many visitors,” explained Mawar (not her real name) as we sat down in her living room in Sorong City, West Papua.

Ibu Mawar is a HIV+ mother who just recently gave birth to a healthy baby boy, thanks to the ARV treatment she’s been taking since she found out about her status. The baby also has been tested with EID (Early Infant HIV Diagnosis), with support from UNICEF in collaboration with DHO, and the result came back negative. He would need to be tested again when he’s 6 months old, and 18 months old.

Ibu Mawar with baby
UNICEF/2019/Fauzan
Ibu Mawar and her healthy son

Because of the high risk of death before the age of 2 years among HIV-infected infants and given the increasing availability of pediatric antiretroviral treatment in many resource-limited settings, UNICEF supported West Papua Province in building the capacity of health providers to provide early virological testing of infants for HIV, since 2018. In one year, the program has successfully saved about 20 children from Sorong City and Manokwari district from HIV infections. Early infant diagnosis (EID) of HIV allows health-care providers to offer optimal care and treatment of HIV infected children, assists in decision-making on infant feeding, and avoids needless stress in mothers and families. EID helps save lives in West Papua.

Stigma is still one of the big challenges faced by PLHIV in Indonesia, including West Papua. It deters people from getting tested, and even to get treatment once they found out about their status. Unfortunately, it’s the same case with pregnant women with HIV. “They’re ashamed of it. Once we tried to visit a pregnant woman who just discovered she has HIV, and we visited her, to check up and try get her on treatment, we got chased by the husband, clutching a long knife,” Sulce Siwabessy told us. Sulce is the Head of Division for Community Health in Sorong City. “That’s one of our biggest issue now, a lot of the PLHIV, once they found out about they status, they don’t come back, just gone somewhere
and we can’t track them or make sure they’re on treatment,” she added.

Since 2009, every pregnant mother receiving Antenatal Care (ANC) in Health Services in Indonesia, should be tested for HIV. UNICEF has been supporting the Sorong City Health Office since 2008, and in 2018 Sorong City was chosen as one of the three pilot area for the Strengthening Maternal, Newborn, and Child Health Program in West Papua, with EID training as one of the activities.  According to Global AIDS Monitoring Report 2018, 49% of pregnant women in West Papua tested for HIV, this is one of the highest percentages in Indonesia, along with Papua. Unfortunately, only 8.5% of pregnant women with HIV are on Antiretroviral Therapy (ART). This is not too far off from the national number, while the HIV testing coverage in pregnant women has doubled from 15% in 2016 to 36% in 2018, the Antiretroviral (ARV) coverage is only 13%. With the target for Triple Elimination in infant of HIV, Syphilis and Hep-B in 2022, there is still so much work to do. And everyone has been working hard.

Ibu Mawar is one of the mothers who found out about her status during her ANC visit. “I was surprised, of course, when they told me I have HIV. But I didn’t really doubt or deny the result. I asked for a divorce from my first husband due to his lifestyle,” explained the mother of three. “I got married when I was 13, he was 38. I had to do it because my dad got into debt, and my first husband was the one who could help us,” she added.

From her first marriage, Ibu Mawar had one kid, now a pre-teen. “My first husband never got tested, so I can’t say for sure. My first born also never got tested, and still doesn’t know my status, I don’t know how to break it to them yet, they also haven’t got tested. No one else know about my status other than me and my husband,” she said. Her first husband now already re-married and has another child. The stigma of HIV added so many complexities to the disease. Not only it attacks you physically, it also attacks you mentally.

“I found out about my status in 2013, when I was pregnant, with me and my now husband’s first child. I took my time before telling him. I waited until I had the baby, and that the baby is healthy. I wanted to show him that the HIV doesn’t affect the children. That even though I’m positive, our child is not, and she’s healthy, and clean,” the 29 years old told us. “I told him my status when the baby was 10 days old, and he went quiet, then asked when I first found out. I straight up told him it’s up to him now whether he wanted to continue the marriage or not, I would accept his decision. And he didn’t want to divorce me,” she added.

Life sure hasn’t been easy for Ibu Mawar, but she’s tough and she’s doing her best to look after her family, especially her three children. Ever since she found out about her status, she’s been on Antiretroviral Therapy (ART), even when she had to get through it alone, when she’s still hiding it from the husband. She took her ARV every day, telling him it was vitamin for pregnant woman. She’s also involved in the peer support group, where she meets other PLHIV. During the interview, one or two of the nurses came by to say hi, and share stories about her, and crack a joke or two. These health officers really care about their patients.

Ibu Mawar with her son
UNICEF/2019/Fauzan
Ibu Mawar at her youngest son at their rent house

ARV is free in Indonesia, and this is great for people like Ibu Mawar. She just has to visit the Health Centre, meet the nurses, get her checkup, and refill her medication for a one-month supply. All free of charge. Although she used to work and support her family, now she’s a stay at home mom, and her husband doesn’t always have a steady job. “My oldest was supposed to enroll in school last June, but we couldn’t afford it yet. I asked around, and entrance fee for Junior High was really expensive. Hopefully by next year we’d have enough money saved for it,” Ibu Mawar said. When asked what her hopes and dreams are, she simply said, “I just want to have my own house, and my kids are healthy.”

*All the names were changed to respect the rights of children and protect their privacy