Today was a very sad day. Today, one of our participants in the Nutrition for HIV-Exposed Infants, Daphrose, passed away at the age of 39. To meet Daphrose, you would never know of the traumas she faced in her life. She was always smiling and laughing. The joy with which she played with her daughter was so very touching. She jumped at the opportunity to learn how to make baskets and banana leaf cards, although her true dream was to return to secondary school.     

What is not clear from meeting Daphrose are the losses that she carried with her. The first hint is within her home. She lived with her two brothers, and her sister next door, in a relatively new ‘umudugudu’. The home is large and well-made, although strangely lacking in furniture. There are wires that travel up the wall to an imaginary light bulb, but no electricity. The story is that her mother died when Daphrose was young. Her father lived in this home with his children, until a few years ago, when he packed all of the furniture (as well as the family’s lone solar panel) and moved to another community to begin a new family. Through this experience, the brothers and sisters became even closer and supported one another through the challenges that they faced. 

When Daphrose became pregnant for the first time, she thought this would be the opportunity to give her daughter what she had lacked. Sadly, this child was born with HIV and died shortly after she was born. She celebrated when her second child was HIV-. But, in a terrible twist of fate, her second child also died. This time, the cause was unclear but thought likely to be due to malnutrition after Daphrose stopped breastfeeding. When her third child was born, she was absolutely determined to avoid the tragedies of the past. She took her HIV medications diligently, followed all of the recommendations for breastfeeding, and joined our pilot group to ensure that her daughter would not develop malnutrition when she stopped breastfeeding. Indeed, her daughter thrived! She is HIV-, and did not suffer the complications of malnutrition as her other child had.

Life was looking good for Daphrose and her young daughter! Tragically, in January, Daphrose became very ill. She went to the hospital, where she was found to have an invasive form of pelvic cancer that is caused by the wart virus (HPV) and is stimulated by HIV infection. She was sent to the referral hospital in Kigali, only to be sent back to Ruli with the news that nothing could be done. Daphrose was in the hospital for 3 months before passing away from this aggressive cancer. Throughout her hospital stay, her sisters of the Ihangane Artisan Association visited her daily to provide food and emotional support.

 Her terrible loss is a reminder that there is still so much work to be done. Her passing weighs very heavily on our entire team, her family, her fellow program participants, and co-workers at Ihangane Association. Especially for the Rwandans who must watch these tragedies every day, it feels as though when they find a way to “plug one hole”, they lose someone to another hole. Despite this, their faith and perseverance carry them through and they continue to do their best. In Rwanda, I often hear “you must try” and “you can do your best”. For those like Daphrose and her daughter, we must try and continue to do our best.

Written on May 17, 2011 and posted later due to lack of internet access in Rwanda.

Part 2: This is the second entry in the blog series by Michella Otmar about the Nutrition for HIV-exposed Infants (NHI) home visits during the Summer of 2010.

Climbing a steep dirt path, we approached a newly build house with a stunning vista of the valley below.  I stopped for a second to catch my breath and take in the view.  We were in Coko, visiting Olive, one of the participants in the NHI program.  She walks two and a half hours each way from her home to Ruli District hospital to participate in the NHI program.  She does this in her flip-flop shoes, her infant child strapped to her back and her toddler in tow.  Though petite in stature, she is a strong and resilient woman.  At the time of our visit, she and her mother had just completed the construction of their new home, a project they completed by hand and on their own.  They built this new house to replace the home they lost in a landslide just a couple months before.  Though the house was cold, without a floor and built on yet another potential slide area, it was a vast improvement to the alternative.  This scenario was not unique to Olive.  Another participant also had lost her home in a landslide and was living in a new home, adjacent to the first house. In both cases, there was concern about damage that could come with the next rains.  One woman lived with her infant in a single windowless room no bigger than a walk-in closet.  Most of the women cook over an open flame indoors where they are exposed to the exhaust of the fire.  All the women dedicate hours to collecting water and preparing it for their children.  None have access to electricity in their homes.        

Completing home visits with NHI program participants was perhaps one of the most important components in helping shed light on the growing complexities of health as it relate to our patients.  Taking medication, receiving formula for one’s infant and food supplementation, is only one small part of improving or maintaining health for our participants and their children.  For many of them, access to the basic resources such as clean water, heat, shelter, food, and medical services, presents a profound challenge.  And yet these basic resources are instrumental in maintaining physical and emotional health. 

In working with NHI participants, one cannot simply look narrowly at just one aspect of health and ignore the rest.  And taking on all aspects of the problem at once would be impossible.  As we assess and address one area, we see a dozen more that need attention.  It seems that this is the heart of the challenges faced in global health and what can seem to be an overwhelming situation.  Completing the home visits certainly exposed “the dozen” additional issues, but is serves as a reminder to keep evolving the projects to include the interweaving factors of health.  They truly are interdependent.  At the year mark of the NHI program, participants were grateful to have been included and eager to continue with The Ihangane Project.  Many of them began a training program in basket weaving and handcrafts with TIP’s Women’s Association & Reinvestment Program.  This not only provides income generation for this vulnerable population but also social interaction and community building. While traveling in Rwanda, Wendy and I would often be told (and then we would remind each other)……. “buhoro, buhoro” meaning ‘little by little’. 

~Buhoro, Buhoro each step makes a difference~

This video shares some of our experiences with Olive and her family:

by: Michella Otmar Part 1: This is the first entry in the blog series about the Nutrition for HIV-exposed Infants (NHI) home visits during the Summer of 2010. In the summer of 2010, Wendy and I traveled to Ruli, Rwanda to work on many of The Ihangane Project (TIP) programs.  One of our central focuses was to evaluate the progress of TIP’s Nutrition for HIV exposed Infants (NHI) program and assess for its potential growth.  At this point, the program had been distributing food supplementation in the form of Sosoma and formula for approximately one year to the 7 participants in the pilot group of this project.  Upon our first meeting with the group since Wendy kicked off the program the year before, it was clear by visual assessment alone that the program was benefitting the nutritional status of the infants. These seven infants appeared to be of age appropriate growth, development and socialization. One of our objectives was to really look at the requirements of the program and see how much of a challenge it presented to the participants.  It was evident to us that the pilot group was actively participating, but we did not want to assume that their enthusiasm translated to mean that the requirements presented no hardship.  Some of the program requirements state that participants attend bi-monthly meetings with the VCT team, obtain a sippy cup for their infant and use boiled water when preparing the infant’s food.  But what did that mean for the group?  How far were people traveling to attend meetings and by what means did they get there? What sources of income did they have?  Where did they collect water and how was it prepared? Where did they collect firewood and how long did this take?  We had many questions about they way they lived and so we asked the group at our first meeting, “Can we come visit you at your homes?”  Everyone agreed and so over the next month, we visited the homes of each of the women.  This was perhaps the most insightful experience of the entire trip. Life has presented many circumstances in which the phrase ‘things aren’t always what they seem’ has been an appropriate statement, but at no other time in my recent memory has it been more apparent than it was during our home visits.  It was during our first meeting at the hospital that I had begun to formulate my judgments and opinions about the women and the program. As the women assembled together for our first meeting, I saw women dressed in bright African cloth.  The vivid colors covered their bodies and crowned their heads.  Children strapped to their backs, cleaned and primped in what seemed to me to be their Sunday best.  Based on my first judgments, it seemed to me that most if not all of the women had running water and perhaps even some electricity.  I had already seen some houses around Ruli and I was now imagining household scenarios for each of the women. Had I only met with the participants during our scheduled health center meetings, I would have kept my first judgments intact and maintained a blissful ignorance to the challenges these women faced.  I would have never learned that two lost their homes in the past year to landslides and both rebuilt their homes by hand.  None of them have electricity or running water for that matter.  All but one have dirt floors, all but two cook with an open flame in an enclosed space. Four of them have other children who have suffered with malnutrition in the past.  None of them are married and four of the women are heads of their household. And one participant walks 2.5 hours one-way to attend meetings at the health center. The shock of the situation was felt not only by the American team, but also our Rwandan counterparts. Karekezi Sylvere, the HV nurse who coordinates the program, explained, “Each of our patients comes to clinic clean and well dressed. They all do everything we ask, and they always arrive on time. I was very surprised to discover the ways that they are living. With each home visit, I saw a new and sad reality of what it means to be poor”.  The home visits exposed the true reality of hardship endured by rural Rwandan poor and has shed light on the numerous needs of our participants.  Click on the photo below to get a glimpse into our experiences: