Both surviving & thriving!

This Wednesday at our HIV care clinic, two of my favorite patients, a set of fraternal twins showed up with their teenage mother and a 12 year old helper. Their mother is 18, about 4 feet 10 and extremely petite. When I arrived in Bundibugyo early last year, I met them for the first time, also at that clinic where their mother receives care, and they were both malnourised and underweight. The little girl especially, Nyakato (right), did not appear to be doing well. (There are a suprising number of twins born here it seems, but often both children don't make it.) I took a real liking to these kids and followed them with interest over the year. Their weights crept slowly upwards, but Nyakato always looked sickly beside her healthier brother, Nsingoma (left). Their mother was faithful in breastfeeding them, in addition to giving them the regular food supplements she received from our nutrition clinic - usually a corn-soymeal blend with oil and sugar - but mixed feeding (breast milk & solid food) from an HIV positive mother carries with it an increased risk of infection for the babies.

Since the twins were approaching the 18 month mark - they were born in October 2005 - I was eager to test them for HIV and have been praying that they would not be infected. Nsingoma screamed mercilessly during and after his finger stick test, but the temper tantrum he proceeded to have was worth it. (He subsequently fell asleep on his mother's back.) Both twins tested HIV negative! Hallelujah. This felt like such a gift, to have both children HIV free and doing well. Yes, they are currently thriving. But children can still get sick - from malaria or diahhreal diseases and go downhill quickly here - so they are not out of the woods, but to not have HIV as part of that mix for them is a real blessing.

When those barely surviving don't make it

On Friday afternoon, I returned from a 3 day meeting hosted by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in Mbarara, to learn that Kyamanuwa, the HIV infected boy I wrote about last week had lost his fight for life. I was deeply saddened. The last time I saw him, he was extremely thin and frail, but I was praying and hoping that his tiny body would begin to respond to the HIV drugs (antiretrovials) he'd been given. It was not to be. The following day on Saturday, Jennifer and I rode our bikes out to visit his family, armed with the name of his village and the names of both of his parents. After a few misguided sets of directions from well-meaning folks we met on the way who didn't really know the family, we located the house, and found both of his parents and his extended family grieving. The burial had been that morning and there were no more tears visible, but the sense of sorrow and heaviness was palpable. Like him, Kyamanuwa's mother has HIV. His father's HIV status is unknown because he's not yet come to be tested. Kyamanuwa is the second child his mother has lost. Only one more, a 6 year old, is still alive. I don't know if either of this child's parents will live long enough to see their child grow up. I also don't know if this child will even survive its childhood. But what I do know is that I have returned from the EGPAF meeting energized and encouraged to train our staff to implement a more complex drug regimen for HIV infected pregnant mothers to prevent transmission to their babies. It will be much more challenging for both staff, mothers, and babies because it means pregnant HIV positive women will have to start taking preventive drugs as early as 28 weeks into their pregnancies - until they deliver - and their newborn babies will have to take these drugs for a week after they are born instead of just a single pill for mother and single dose of syrup for the baby. BUT, if this can happen, the chance of having a baby that is HIV infected is reduced from 30% to just 2%.

Could this more complicated regimen have saved Kyamanuwa from becoming HIV infected? Only God knows the answer to that, but we can be confident that we will see Kyamanuwa again one day - in heaven. My prayer, as Jennifer prayed when we were there, is that his mother can share in this hope as well.

Which came first?

We hope the order is (1) chicken coop; (2) baby chicks; (3) many eggs for malnourished and at-risk children! The chicken coop is finally finished, and we plan to transport day-old hybrid "layer" chicks from Kampala on March 5. On Thursday, the interior of the chicken coop was sprayed with a strong insecticide, so in two weeks the coop should be ready for the chicks!

Valparaiso's World Relief Campaign

The 16^th of February will kick off Valparaiso University’s World Relief Campaign. We are excited about their efforts to raise money to bolster the nutrition efforts for malnourished children in Bundibugyo. The funding will be used to empower communites to create sustainable decentralized feeding centers. This will involve recipe trials for nutritious foods, soybeans for planting and returning back to the program, chickens/chicken coops for eggs, and male dairy goats for breeding with local female goats, providing a local milk supply for needy children. We want to thank the SALT committee and all of those who are working so hard to make this a successful campaign. We will be happy to answer any questions you have along the way. Feel free to comment.

What is the Kwejuna Project?

The Kwejuna project is a World Harvest Mission program that is supported by a grant from the US-based Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) which Drs. Scott & Jennifer Myhre received at the end of 2003. The main aim of the Kwejuna project was to establish a district-wide program in Bundibugyo to prevent mother to child transmission of HIV (PMTCT). HIV infected mothers can pass HIV onto their babies during pregnancy, during delivery and through their breastmilk. The program identifies pregnant mothers who are HIV positive by offering HIV counseling and testing to all pregnant women at their first prenatal care visit. Most women agree to be tested, the results are available within 20-30 minutes, and before the women go home that day, they (and we) are aware of who is HIV infected. For those who test positive, they receive additional counseling about what this means for them and their baby and they are then given a single dose of an HIV drug called nevirapine to take during labor. The baby is also supposed to get this drug, in syrup form, within 3 days of its birth, and this combination of drug to both mother and baby, cut in half the risk that a baby will be born HIV infected. Without any drug intervention, an HIV infected mother has about a 30% chance of having a baby that is also HIV infected.

From the pregnant mothers attending prenatal care who were first tested in April 2004, we have so far tested over 21,000 (!) and identified a little under 600 who are HIV infected (which is an HIV prevalence of 2.5%). The program began in 2 sites that year and by the end of 2006 was operational in all 9 Ministry of Health-run health centers, and largely implemented by Ministry of Health staff that the Kwejuna project, with EGPAF support, has helped to train in PMTCT. EGPAF has also paid for us to encourage mothers to deliver at health centers by supporting the cost of a mama kit which is given as a gift/incentive for every health center delivery. (This is important because most mothers here, 70-80%, deliver their babies at home and this makes it really challenging for the baby born to the HIV positive mother to receive the nevirapine syrup in time for it to make a difference.) The mama kit, given out to all mothers regardless of their HIV status, includes a plastic sheet which covers the delivery table, sterile gloves, a tie for the umbilical cord, and a sterile blade to cut the cord. The highlight of the kit is a piece of local cloth, called a kitengye, which the new born baby is wrapped in (like in the picture) and then goes home in. Giving a kitengye to every new born baby in a health center has been a huge hit and in 2006 we saw a 30% increase in births at health centers across the district.

Other aspects of the Kwejuna project include linking our mothers into HIV care so that they can receive HIV drugs for themselves and remain healthy for longer. We also try to link any familiy members, including their husbands or babies, who are HIV infected into HIV care as well. Another aspect of Kwejuna is the provision of food supplements to these families. (See the 'God gives generously' blog entry for a description of that.)

The Kwejuna project takes its name from the expression of congratulations that are given to women here when they have just delivered a baby. Webale Kwejuna means thank you for surviving (the birth of your baby).

Nutrition Drama

Community drama is one way to spread the word about the importance of good nutrition early in life. So 3 nutrition dramas were commissioned and performed in Bundibugyo District in January, 2007, in the villages of Busunga, Butama, and Buganikere. The main themes of the drama were that good nutrition early in life can help children grow and develop well, ultimately contributing to their success in life, and that one does not have to be wealthy to provide healthy foods for family members. The plot was outlined by 3 Ugandan friends, and details were added by the Bubandi Youth Drama Group, commissioned to perform the dramas. The drama follows 2 families: a rich man’s family and a poor man’s family. The rich man does not go to the maternity ward with his pregnant wife, does not help her with chores when she is pregnant, and spends his resources on things like nice clothes and a motorcycle. The poor man goes to the maternity ward with his wife, humbly helps with chores especially when she is pregnant, and pours a lot into thinking about and providing healthy foods to feed his family, mostly from his garden. There is an emphasis on the following messages:
-Breast milk is really good for children.
-Children (and adults!) need some food from 3 different food groups at each meal. The groups are body building foods (soybeans, groundnuts, eggs, meat, fish), energy providing foods (yams, rice, cassava), and protective foods (papaya, oranges, local greens).
-Hygiene is important.
-Plant-based protein sources are healthy and inexpensive; one does not have to eat meat to be healthy.

One of my favorite parts of the drama is the beginning, when the group sings, dances, and drums to draw a crowd! The group's energy and love for what they are doing is really contagious!

God gives generously

Several days ago, I wrote an introduction about myself and closed with describing one of the highlights of my role as coordinating bi-monthly food distributions for our Kwejuna mothers and their families. For the last several years, the United Nation's World Food Program (WFP) has been providing food supplements (usually corn-soymeal blend, beans, oil and sometimes rice) in Bundibugyo to malnourished babies and infants, primary school children, and most recently HIV infected mothers and their families. However, WFP decided to shift their emphasis to other areas of Uganda and closed their Bundibugyo office at the end of last year. Since having adequate nutrition is an essential component of good health for those living with HIV, we sought to continue to provide food supplements focussing on protein rich foods like beans, and adding cooking oil, with private funds that we hoped to raise through our supporters and churches. These food distributions serve not just as an opportunity to provide good nutrition, but also serve as a way to follow-up on our mothers, test their babies and husbands and link them to care, provide social support, and offer spiritual encouragement and the hope of the gospel.

In the days since I mentioned our desire to keep this food program going, I have received news that a generous couple from my home church, Redeemer Presbyterian Church in New York City, have donated the full amount to keep this program alive for another year! I am in awe of their generosity. As I shared this with the Kwejuna mothers at a family support group I was running yesterday, the women clapped and cheered loudly. It was thrilling to see their unbridled gratitude. I also had the opportunity to remind them- and myself- that this is ultimately a generous gift from God, the giver of all good and perfect gifts. Mukama assimwe! Praise be to God!

Keren

This past Tuesday we had our monthly milk distribution for the motherless infants in the area. 42 children were brought from as far as the Democratic Republic of Congo (DRC) despite the pouring rain. We were so pleased to see many chubby children and others who were making good progress. We enrolled 6 new motherless infants, a set of premature twins averaging 4 pounds each, and a severely malnourished 8 month old who was about 9 lbs 9 oz.

The newborn pictured here has a neat story. Her caretaker lives in DRC and for a year has been breastfeeding a little cutie named Sukrani. He was a relative to her divorced husband, but the woman volunteered to nurse the child. We assisted the caretaker, whom we now call Mama Sukrani, with a food stipend to keep up her milk supply and some porridge when the child was older. Pat would say that if she would be any child in this program, she’d want to be Sukrani, because he was so well loved and cared for. We were not the only ones who noticed. The little girl pictured here lost her mother soon after her birth on New Year’s Day 2007. The community knew immediately what to do. They found Mama Sukrani and asked her to breastfeed her. She willingly agreed. Later, she gave her my name, Keren.

Surviving, but barely

Take a look at this beautiful child, Kyamanuwa. His mother is in our Kwejuna Project and when this photo was taken in early December, he was a picture of health. At that point, he had tested HIV negative and we thought he would be fine, but in the following weeks, he began to lose weight and become very sickly. Dr. Jennifer Myhre then re-tested him for HIV and found he had become infected (either because he may have already been infected when he tested negative but it wasn't evident because there is a delay in when antibodies to HIV show up on a test, or perhaps he became infected from his mother's breastmilk after testing HIV negative). What a cruel irony.... I saw him yesterday in the clinic and almost burst into tears in front of his mother. He was barely recognizable, except for his large penetrative, still curious eyes. He looked at me through them with recognition, but I couldn't coax a smile from him. No wonder. He was covered in a rash and looked like just skin and bones, as he tried to grasp a small piece of bread which he could then barely swallow. Dr. Jennifer has started him on HIV drugs (antiretrovirals) but so far his body doesn't seem to be responding to them. These drugs, when they work, can bring people who are on the edge just hanging onto life, back from the brink. Please, please join me in praying for Kyamanuwa. I truly believe that prayers offered up to our God - the one who created and loves children - on Kyamanuwa's behalf can extend the life of this precious child. (For Dr. Jennifer's story about Kyamanuwa, visit her blog at www.paradoxuganda.blogspot.com).

Pamela

Hi, I'm Pamela Brown-Peterside and I help to manage the Kwejuna Project, our program which aims to prevent the transmission of HIV from mothers to their children (PMTCT). Following 9 years of directing a community-based research site in New York City with high-risk HIV negative women, I first came to Bundibugyo in November 2004 to help out with Kwejuna when it was in its first year. I was drawn to coming here in large part because I was excited about moving into prevention with HIV infected women, serving on the frontline of the epidemic in sub-Saharan Africa and doing so living and working alongside other Christians. I stayed for 3 months, and then felt called to return for a 2 year committment and arrived back here in January 2006. My role in Kwejuna is largely administrative. I help to support our sites -we now have 9 - by providing supervisory support to the Ministry of Health staff who implement the program, ensuring they have have adequate supplies to conduct regular HIV counseling and testing for our pregnant mothers, and assisting with obtaining monthly reports from these sites, which give us a sense of how the program is doing. I also try to track the follow-up of women who are identified as HIV positive and faciliate their linkage into care. In Bundibugyo, there are 2 Ministry of Health clinics that provide HIV care and antiretroviral drugs to infected patients, and I help to facilitate the smooth running of these under-staffed and bursting-at-the-seams out-patient services. I have also worked with traditional birth attendants (also known as lay midwives) by providing training to them about PMTCT and encouraging a stronger relationship between them and professionally trained midwives who are hospital based. One of the highlights of my role over the past year has been to co-ordinate bi-monthly distributions of food to our Kwejuna mothers and their families, which up until the end of 2006 had been supplied by the UN's World Food Program. Now that these food supplements have ended, we are currently hoping to raise funds (about $15,000) to continue this program for an additional year. If you would like to contribute to this effort, please email me at PamelaBrownPeterside@gmail.com for more information about how to do so. Thanks!

I don't have a personal blog per se, but if you'd like to know more about my work in Bundibugyo with World Harvest Mission over the past year, please visit www.lamppostmedia.net.

Alex

This is Alex. He is a Ugandan Christ School agriculture teacher with a lot of knowledge and hands on experience with chickens, goats, even fish! He is also working as a chicken consultant. Alex is coordinating the construction of the chicken coop, purchase of chickens, vaccinations, and hiring of a chicken keeper. Alex is really hard-working, with responsibilities ranging from teaching students to caring for goats and fish ponds. I admire his devotion to his family - though he lives far from them, he pays school fees for his younger brothers.

Lamech

Here is a gifted man. Lamech has come to serve in this remote district, though his home is elsewhere in Uganda. His training is in animal husbandry, and he is a terrific communicator. Since Sept 2006 he's been visiting the homes of all of the local dairy goat breeders to bring encouragement and has continued training on care and feeding of the goats. There is not a good veterinary care system in place in Bundibugyo, so he also provides those services. December and January he spent his days meeting with sub county leaders and their communities. Some days he has about 100 people gather to learn. He is helping them to understand the value of dairy goats and how their care differs from the local goats that are in abundance. Lamech is also helping the people who will receive goats at the next distribution (planned for March) prepare shelters and identify fodder. People are always telling him how grateful they are for his time and valued advice.

Stephanie

Hey everyone, I’m Stephanie Jilcott. When I was a World Harvest intern in Bundibugyo 2 years ago, I worked on the World Harvest Mission/ Nyahuka Health Center Nutrition Program. After completing my graduate studies in nutrition, I decided to return to Bundibugyo for 18 months to continue working with the WHM/NHC Nutrition Program. I am also working on decentralization of the current Program to 2-3 additional health centers in the district; with decentralization, we hope to transition to providing patients with locally available foods. One locally available food is eggs - We have nearly finished construction of a chicken coop as part of a demonstration project to use eggs for children in the nutrition program. To educate the community about the importance of healthy young child feeding practices, we have commissioned nutrition dramas to be performed in several villages. In January 2007, we collected anthropometric data from 900 children from 30 different villages in Bundibugyo to guide programmatic efforts.

Scott & Jennifer

Our team leaders, Drs. Scott & Jennifer Myhre, have been addressing health concerns in this community for well over a decade. Currently they are running the Kwejuna Project which acts to prevent the transmission of HIV from mother to child (PMTCT). They provide medical attention to the mothers and children. For over a year, they have been the conduits of World Food Program rations for HIV/AIDS mothers. Now they are looking for other sources of nutritional assistance. Jennifer has spearheaded the WHM/NHC Nutrition Program and continues to care for the sick children who are enrolled as well as those who are inpatient at Nyahuka Health Center. They have a great blog: http://www.paradoxuganda.blogspot.com/.