Hope for the long run: Baylor College of Medicine Children’s Foundation Malawi supports children living with HIV from birth to adolescence and beyond
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Priscilla Phiri[1] is 34 years old and lives in Lilongwe, the capital of Malawi. She grew up in the southern region of the country and lived with her grandparents after her mother died of AIDS when she was young. Priscilla left school in grade nine and went to work cleaning houses. She moved to Lilongwe in 2002, where she met her husband Peter, who was a shopkeeper at a local grocery store. They married the following year and had a daughter, Angella.
When Angella was two years old, she acquired tuberculosis (TB) from an uncle and began treatment. While receiving care at Kamuzu Central Hospital, Angella was referred for HIV testing next door at the pediatric HIV Center of Excellence run by Baylor College of Medicine Children’s Foundation Malawi (Baylor-Malawi). Angella tested HIV-positive. “I was upset,” Priscilla said. “My daughter, my only daughter, was sick. I was very active and made sure that we didn’t miss any appointments. We were serious about doing all we could to help Angella get better. She was on treatment for TB and HIV, as well as food supplements.” Angella gradually recovered and became healthy. Peter and Priscilla were advised to test for HIV but did not, concerned that they would also be diagnosed with HIV. |
Mercy, 1.5 years old, plays at Baylor’s Center of Excellence in Lilongwe, Malawi
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Several years later, in 2009, Priscilla became sick. Confused, she ran away from home and was taken to the Kamuzu Central Hospital, where she was diagnosed with cerebral malaria and HIV.
“At first, I was very disappointed,” Priscilla said, “but I came to accept my diagnosis over time because of the counselling I received at a health center close to where I was living.” Priscilla started antiretroviral therapy (ART) and disclosed her HIV status to Peter a month later. He was sad but not surprised, she said, as he had noticed her becoming ill. “When I suggested that we go test together, he accepted. He also tested HIV-positive and began treatment.”
A new addition to the family: Mercy
As Angella grew older and the entire family was healthy on treatment, Priscilla and Peter decided to have another child. Mercy was born prematurely on July 13, 2016, and remained in the hospital for several months. Mercy’s first HIV test was negative. Priscilla fed Mercy breastmilk and supplemented it with formula to ensure she was receiving adequate nutrition. Priscilla stopped breastfeeding Mercy when she was four months old, when they both developed malaria. At the health center, Mercy was also tested again for HIV, and this time her result was HIV-positive.
“I was very surprised when they told me,” Priscilla said. “I asked them, ‘What happened? She was born HIV-negative.’ The doctor told me that Mercy may have become infected because of the mixed feeding. I thought of Angella: she was doing well, so I believed that Mercy could also be healthy. My husband was upset about Mercy’s HIV status. Our neighbor came and advised us that we should do the best we can despite this diagnosis; that we should take care of our children and go on with life.”
Supporting young people living with HIV
When asked by health workers where Priscilla wanted Mercy to receive treatment, it was an easy choice. Angella had been receiving treatment and care at Baylor-Malawi’s Center of Excellence in Lilongwe for the past 10 years, and now Mercy would too.
“I want to thank Baylor for helping Angella,” Priscilla said. “I had lost hope, and they worked hard to make sure she recovered. I have learned a lot from Baylor. Angella was very malnourished, and they taught me what to feed her and helped us with supplements.” Angella is now part of Baylor-Malawi’s Teen Club, which provides psychosocial and peer support to youth living with HIV.
“At Teen Club, Angella has learned about adherence, hygiene, and how to take care of herself,” Priscilla shared. “She understands her HIV status and doesn’t need me to remind her about taking her medication. Angella has made a lot of friends at Teen Club and is happy. They encourage each other to stay optimistic and adhere to their treatment.”
Angella also attended Camp Hope, an annual week-long retreat for youth who have recently been told their HIV status. “She learned a lot,” Priscilla noted, “and I want to see that continue. Camp Hope teaches our children how to have a bright future. They learn skills like cooking and building relationships with others.”
Angella is now in grade four in school. Her favorite subject is English, and she helps with the cooking at home.
Learning and growing together
Priscilla and Peter were asked to enroll Mercy in a ritonavir-boosted lopinavir (LPV/r) pilot program, an initiative by the Ministry of Health and supported by Baylor-Malawi to provide a more effective medication as part of first-line ART for children under three years of age.
“When I first heard about the new medicine,” Priscilla said, “I was worried about Mercy’s treatment being different from Angella’s. After Baylor staff explained it to me, I understood and accepted to be part of the program. At first, I put the pellets in a cup with water, but Mercy vomited them back up. Baylor advised me to put the pellets on top of her porridge, and now she takes them easily and is doing well.”
Priscilla’s hopes for her children include: “That they know how to take their medication well and not miss appointments. When they grow up, I want them to finish school and get a good house and job and become independent.” Priscilla appreciates knowing that Baylor-Malawi is there to help achieve that future.
*All quotes translated from Chichewa
[1] The client names in this story are pseudonyms
“At first, I was very disappointed,” Priscilla said, “but I came to accept my diagnosis over time because of the counselling I received at a health center close to where I was living.” Priscilla started antiretroviral therapy (ART) and disclosed her HIV status to Peter a month later. He was sad but not surprised, she said, as he had noticed her becoming ill. “When I suggested that we go test together, he accepted. He also tested HIV-positive and began treatment.”
A new addition to the family: Mercy
As Angella grew older and the entire family was healthy on treatment, Priscilla and Peter decided to have another child. Mercy was born prematurely on July 13, 2016, and remained in the hospital for several months. Mercy’s first HIV test was negative. Priscilla fed Mercy breastmilk and supplemented it with formula to ensure she was receiving adequate nutrition. Priscilla stopped breastfeeding Mercy when she was four months old, when they both developed malaria. At the health center, Mercy was also tested again for HIV, and this time her result was HIV-positive.
“I was very surprised when they told me,” Priscilla said. “I asked them, ‘What happened? She was born HIV-negative.’ The doctor told me that Mercy may have become infected because of the mixed feeding. I thought of Angella: she was doing well, so I believed that Mercy could also be healthy. My husband was upset about Mercy’s HIV status. Our neighbor came and advised us that we should do the best we can despite this diagnosis; that we should take care of our children and go on with life.”
Supporting young people living with HIV
When asked by health workers where Priscilla wanted Mercy to receive treatment, it was an easy choice. Angella had been receiving treatment and care at Baylor-Malawi’s Center of Excellence in Lilongwe for the past 10 years, and now Mercy would too.
“I want to thank Baylor for helping Angella,” Priscilla said. “I had lost hope, and they worked hard to make sure she recovered. I have learned a lot from Baylor. Angella was very malnourished, and they taught me what to feed her and helped us with supplements.” Angella is now part of Baylor-Malawi’s Teen Club, which provides psychosocial and peer support to youth living with HIV.
“At Teen Club, Angella has learned about adherence, hygiene, and how to take care of herself,” Priscilla shared. “She understands her HIV status and doesn’t need me to remind her about taking her medication. Angella has made a lot of friends at Teen Club and is happy. They encourage each other to stay optimistic and adhere to their treatment.”
Angella also attended Camp Hope, an annual week-long retreat for youth who have recently been told their HIV status. “She learned a lot,” Priscilla noted, “and I want to see that continue. Camp Hope teaches our children how to have a bright future. They learn skills like cooking and building relationships with others.”
Angella is now in grade four in school. Her favorite subject is English, and she helps with the cooking at home.
Learning and growing together
Priscilla and Peter were asked to enroll Mercy in a ritonavir-boosted lopinavir (LPV/r) pilot program, an initiative by the Ministry of Health and supported by Baylor-Malawi to provide a more effective medication as part of first-line ART for children under three years of age.
“When I first heard about the new medicine,” Priscilla said, “I was worried about Mercy’s treatment being different from Angella’s. After Baylor staff explained it to me, I understood and accepted to be part of the program. At first, I put the pellets in a cup with water, but Mercy vomited them back up. Baylor advised me to put the pellets on top of her porridge, and now she takes them easily and is doing well.”
Priscilla’s hopes for her children include: “That they know how to take their medication well and not miss appointments. When they grow up, I want them to finish school and get a good house and job and become independent.” Priscilla appreciates knowing that Baylor-Malawi is there to help achieve that future.
*All quotes translated from Chichewa
[1] The client names in this story are pseudonyms
Baylor-Malawi: Supporting the national HIV response and achievement of the UNAIDS 90-90-90 targets
Baylor-Malawi’s Center of Excellence, the country’s only stand-alone pediatric HIV clinic, was opened in 2006. Baylor-Malawi is also implementing the Tingathe program, supporting more than 60 health facilities in four high-prevalence districts through the USAID-funded Innovative HIV Services for Malawi program under the EQUIP mechanism. Through this program, the organization is supporting the delivery of high-quality comprehensive HIV services to help Malawi achieve the UNAIDS 90-90-90 targets.
Baylor-Malawi’s assistance to provide optimal ART to children across the country contributes to enhancing treatment access as well as retention in care – ultimately leading to better health outcomes.
Baylor-Malawi’s Center of Excellence, the country’s only stand-alone pediatric HIV clinic, was opened in 2006. Baylor-Malawi is also implementing the Tingathe program, supporting more than 60 health facilities in four high-prevalence districts through the USAID-funded Innovative HIV Services for Malawi program under the EQUIP mechanism. Through this program, the organization is supporting the delivery of high-quality comprehensive HIV services to help Malawi achieve the UNAIDS 90-90-90 targets.
Baylor-Malawi’s assistance to provide optimal ART to children across the country contributes to enhancing treatment access as well as retention in care – ultimately leading to better health outcomes.
