Keeping Infants HIV-Free Through Nutrition
(The identities of the mothers and children could not be revealed so at protect the research being conducted.)
It was Juliette Mukayinga’s worst day of work in the past year.
Mukayinga, a nurse working on a research study for the Elizabeth Glaser Pediatric AIDS Foundation in Rwanda, learned that one of the mothers in the study had just found out her baby was HIV-positive.
“I can’t forget the tears of the mother, how she was grieving when she was informed about her child’s status,” said Mukayinga. “I explained to the mother that normally one result does not confirm the baby’s status, that we have to wait for confirmation from another test.”
When the confirmation test came back, it showed that the child was HIV-negative – a relief for the mother, but only after riding an emotional roller coaster that too many mothers experience every day all over the world.
Globally, nearly 700 children are infected with HIV daily. About 90 percent of those infections are from mother-to-child-transmission, in which the virus is passed from an HIV-positive mother to her baby during pregnancy, childbirth, or breastfeeding. Almost all of these infections are preventable through giving anti-retroviral drugs to the newborn or to the mother.
The research study Mukayinga is working on, the Kabeho study, looks at a new approach to preventing mother-to-child transmission of HIV (PMTCT): giving a mother anti-retroviral drugs for life and analyzing her child’s diet from birth to 18 months to see how both the drugs and proper nutrition impact the child’s HIV status.
Nutrition is extremely important when living with HIV. Maintaining a healthy diet is key to maintaining overall health while on HIV medication. Many medications need to be taken with food. For children, nutrition is especially important. In order to grow at a healthy physical and cognitive rate, a healthy diet is essential for infants and young children, particularly those exposed to HIV. The combination of a good diet and HIV medication could reduce the chances that HIV-exposed children will contract the virus.
“The findings from this study are going to help us understand what is happening in terms of feeding the babies and anything we can do to accelerate what the babies’ needs are,” said Dr. Jeanine Chondo, a medical doctor by training and the deputy dean of Rwanda’s School of Public Health. “Many, many people are watching this study.”
If the Kabeho study shows that this new process is more effective than other methods of PMTCT, it could mean a revamping of public health policies around the world and thousands more children living an HIV-free life.
On a recent morning, Vincent Iyamuremye, a research study nurse at the health center in Kimisagara, pokes his head out of his office into the hall. A half dozen colorfully-dressed mothers and their babies wait on wooden benches. Vincent waves one woman in. She sits down, baby squirming in her lap, and Vincent spreads out a pile of kitchenware and utensils on the desk in front of her. The woman is one of 104 mothers he sees, the most of any health center involved in the Kabeho Study.
“What did you feed your baby in the last 24 hours?” Iyamuremye asks the mother. How much? He holds up a clear baby bottle with markings on it. This much? The mother points to a mark near the top, and Vincent writes something down in the mother’s binder. The questions and answers about the baby’s diet go on for about 30 minutes.
This 24-hour food recall, which happens once a quarter with each mother, is one of the hardest parts of being a research nurse. But it is one of the most important parts of the Kabeho study, because collecting accurate nutrition data is essential to understanding what role nutrition plays in preventing mother-to-child transmission of HIV.
Chronic malnutrition among Rwandan children aged six months to five years stands at 43 percent, according to a 2012 report from the Rwandan Ministry of Agriculture and Animal Resources and the World Food Program. The government has been combating this with a number of recommended practices, including exclusive breastfeeding for a child’s first six months, a standard set by the World Health Organization (WHO). After six months, WHO recommends adding in other liquids and solid foods until 24 months, at which time breastfeeding can stop. But a breastfeeding HIV-positive mother poses a risk to her child. Unless, that is, she rigorously sticks to her antiretroviral (ARV) drug regimen, which helps prevent the passing of the virus to her child.
“Not only is malnutrition a problem in Rwanda, where we have around 45 percent of our children under age five who are stunted [low height for age], but in other countries as well. If we let malnutrition be a problem for that particular group exposed to HIV, we may lose our children,” said Dr. Jeanine Chondo.
Therefore, research nurses work hard to make sure mothers remember as much as they can. For instance, the bowls, plates, bottles, and cups are there to help mothers accurately remember how much of which kinds of foods their child ate.
During the 24-hour recall, mothers sometimes don’t remember what they fed their child. Or someone else – a nanny, a neighbor, a relative – fed their child, so the mothers aren’t clear on what their child ate the day before.
Since the study started in March 2013, these quarterly food quizzes plus once-a-month health Q&A sessions have yielded close relationships between the nurses and many of the 608 mothers participating in the study. This despite the fact that the 13 research nurses can’t give advice, provide care, or intervene in the mothers’ lives in any way that could influence the data they’re collecting. Instead, the research nurses work closely with other health center nurses and encourage mothers to seek actual care from the non-study nurses and doctors at the same health center.
“We have become like the brothers and sisters,” said Iyamuremye, “They tell me their news, some of them they are doing business, they come and tell me about their business. We are very happy.”
“It’s for those who will be born later and have a great chance of being negative”
As the nurses collect information and input it into tablets, Dieudonne Ndatimana is sitting in a sparse office in Kigali downloading, compiling and evaluating all that information. Ndatimana is the data manager on the Kabeho study, and he’s a big fan of clean data — meaning the information collected by the study nurses is valid and accurate. So if, for example, a nurse inputs that a mother is 30 years old, the mother must really be 30 years old.
“When the research is published and is available to the public, the first thing people will look at is the data,” said Ndatimana. “So it’s very important to have clean data.”
Since the Kabeho study tracks mothers and babies through the children’s first 18 months of life, results won’t be ready until October or December 2015, with results published shortly thereafter. Ndatimana and the study nurses and even the mothers are excited to find out the results.
“The women, they have the feeling they’re providing information that would help lead to elimination of HIV,” said Mukayinga, research study nurse at the Remera Health Center. “They usually say, ‘Even if this might not be very helpful to our current babies, but at least it’s for those who will be born later and have a great chance of being negative.’”
— Written story and photographs by Laura Elizabeth Pohl for the Elizabeth Glaser Pediatric AIDS Foundation