Breaking the news to children living with HIV: a non-profit takes the lead in Ecuador

GUAYAQUIL: Jean's book of heroes occupies pride of place at a clinic run by Fundacion VIHDA, a non-profit working to prevent transmission of HIV from mother to child in Ecuador's largest city, Guayaquil.

One would expect illustrations of princes to jump out of the pages of her book. Instead, there are handmade drawings of her grandmother. 

Since her mother's death, Jean, who has tested HIV positive, is being looked after by her grandmother. The biggest concern for families like hers is how to break the news to a child about his/her HIV status. This concern prompted Fundacion VIHDA to come up with a programme for diagnostic disclosure of HIV to children and to prepare them for their life ahead. Two years since, 15 children, having an average age of 10 to 12 years, have completed the programme. 

Globally, 3.2 million children, under the age of 15, were living with HIV in 2013, according to UNAIDS. They comprised 9.1% of all people living with HIV. 240,000 children worldwide acquired HIV in 2013: one new infection every two minutes. 

"A significant number of kids in Ecuador acquire the HIV virus from their mothers who may not have been able to receive treatment on time to prevent transmission to the child. As kids grow up, they start asking questions. They know how to read signs at hospitals and labels on flasks. It is important for the child to know that he is not sick and that he has rights," says clinical psychologist Dr. Claudia Zambrano, one of the founding members of Fundacion VIHDA. 

Zambrano and her team have individual sessions, every fortnight, for children living with HIV that approach the clinic. A specific action plan is drawn up based on the personal situation of every child. "We work with the child's personal history, their specific life circumstances and his/her family, in order to address their needs. The children are taught about wholesome health, just like in school. They are given a general idea about medical conditions, concepts like viral load (amount of HIV in a blood sample), drugs and how they react in the body," says Zambrano.Group sessions are held with peers after a couple of months so the child gets a support network. 

Nine-year-old Valentina had stumped a bunch of paramedics at her school when she told them that she had HIV. She had learnt of her diagnosis from her aunt and did not confide in her friends. But when the paramedics started quizzing students about their allergies and medical conditions, Valentina thought it was okay to tell. "Valentina was nervous when the paramedics spoke to her teachers. I went over to her school and met the authorities. We spoke to Valentina and strengthened the feeling that there was nothing wrong with her," said Zambrano. After that episode at school, things changed as Valentina's teachers and principal were more open to the topic. Valentina continued two years more in the same school and is now in college. She comes regularly to the Fundacion VIHDA clinic and discusses updates in her life as a teenager, occasionally attending some of the group sessions held for younger kids living with HIV. 

The diagnostic disclosure programme has no fixed duration. "Kids come to us at different stages. Some of them approach us in crisis after getting to know of their diagnosis in difficult situations. In such cases, we have to work on repair and stress on the fact that although the HIV status is an integral aspect of the child's life, it does not define him as a person. We seek family support and also counsel families on tackling the situation," says a member of the psychological counselling team at Fundacion VIHDA. Children in crisis are burdened with a lot of questions and anxieties. They know they have greater physical restrictions than other kids their age. Some of them fear they would die like their mother did. Others are worried that they would get sick often and may not have money to pay for medication in future. "Children are taught to keep information about their health situation private and not disclose it to any of their friends or acquaintances. But there have been situations where classmates or teachers have found out and started discriminating against them. In such cases, parents or grandparents are encouraged to deal with the situation firmly as we have laws against discrimination of people living with HIV. The child may change schools to overcome discrimination. They work very hard to regain self-esteem and overcome that episode," says Zambrano. 

At Enrique Sotomayor, the largest maternity hospital in Guayaquil where 20% of Ecuador's children are born, a team headed by Dr. Mercedes Ortiz have been fighting to bring down the number of mother-to-child transmissions, despite scarce resources and cultural stigma against HIV. "The risk of transmission from mother-to-child can occur during pregnancy, breastfeeding or birth. We provide information to all our female patients on why it's important to get tested for HIV and how to prevent transmission of the virus to their babies," says Ortiz. 

From the moment of diagnosis, antiretroviral (ARV) medication has to be administered to the pregnant woman and it has to continue indefinitely. Prior to the birth of the child, these ARVs reduce the amount of virus in the bloodstream and prevent transmission from mother-to-child. On birth, babies must be given infant antiretrovirals during the first month of their life and they have to remain under medical observation till they are 18. 



Somos una organización ciudadana sin fines de lucro que:

Lucha por detener la transmisión madre-hijo del VIH durante el embarazo, parto y lactancia.
Educa sobre qué es, cómo se transmite, cómo se previene y cómo se trata el VIH/Sida.
Promociona la realización y fácil acceso a pruebas voluntarias de VIH.
Asiste a personas viviendo con el VIH/SIDA a acceder a servicios médicos, psicológicos y sociales disponibles.