Mission to the World / ACT HIV Program

http://www.mtwact.org/mtwact.org/Work.html

This will be my last post from Addis, but I do plan on posting more pictures and some stories when I get home, where the internet is something I can lovingly take for granted. We have spent two weeks doing some amazing things, and so much of it would not have been possible, or at the very least would have been so much more difficult, without the generosity of all of you—but also of Bekah and Jonathan Dhillon, who are living and working here with their two young children for a year. Keep them in your prayers as they round out their year here in Addis.

Yesterday was spent with the HIV and TB project where Bekah and Jonathan work. I had an amazing day talking about HIV care here in Ethiopia and HIV care in the US. It was great to be able to share research results with them on some of the projects I jave worked on for the last 10 years through IMPAACT and PHACS. I was able to talk about our HOPE program, and they talked about the issue of women continuing to have babies after diagnosis. The thought initially was to counsel them to have no more children—kind of like what we were doing not that many years ago in the US. They found that no matter what type of counseling they gave them they still kept having kids. So we talked about the HOPE program and how a counseling program for healthy pregnancies is something that they could possibly entertain. It’s hard when many time the pregnancies might not be planned by the women and may be a product of "coercion". So, again empowering women with as much information as possible may be a better way to move forward, and they were discussing just that.

In the afternoon I was able to see several of their HIV + children. This was so interesting and so much fun for me. I loved seeing kids with HIV and talking about their health histories and their medications and providing some education to the health care providers, as well as to the families when I could. I also really was able to learn so much about how the care of kids with HIV in the community differs from the care provided in an orphanage setting, and also about their similarities. Again, the same old problems with adherence are universal when the kids hit adolescence. One thing that’s clear is that some of the kids who were not yet on HIV medications probably should be, and we would likely see some great growth and better overall health if they were. This project was willing to fund more viral loads for the kids, and we talked about when a viral load might help. I shared some case studies of the many kids who come home from Ethiopia with that dreaded K103 mutation-making, non-nucleoside analogue—a poor choice in the long run. They all agreed it was due to the Nevirapine used in PMTCT (Prevention of Mother To Child Transmission). It was one of my favorite days in Ethiopia, just being with Beakh doing the home visits and seeing patients in the afternoon and just getting to talk about HIV care and ways to improve it.

Today I visited an another orphanage, Kidane Mehret, and that was an awesome experience which I will share with you all when I get home. All the orphanages (care centers) I visited were so different—they all had similar challenges—but the overall feel and they way they handled things were unique.. Thanks again to all of you for following me and supporting me. More pictures and stories to follow.

Love,

Emily

AHOPE

I had a wonderful time visiting AHOPE, http://www.ahopeforchildren.org/index2.html. I can say that much has changed in the last 5 years- and yet there is, as one can imagine, always room for more improvement. The younger kids are at "Little AHOPE," which is, interestingly enough, at the "Old CWA" care center. I recognize it from photos (it is not where my children were kept when we were not allowed to see them in the care center). It is much nicer than the old little AHOPE. We met with the nurses and the director for quite some time. I presented some interesting case studies of kids who had come home and things we have learned and what we provide them as far as health care, counseling referrals, etc. when they come home. They had excellent questions and we really had a great discussion. The nurses asked great questions about resistance and adherence and child development. They have many new programs in the last 5 years. I will try and describe them here the best I can:

Little AHOPE is for double orphans from birth through about age 8. There are more boys than girls—this is unexplainable. It is not due to adoption of girls over boys—it is just that more boys come in than girls. It could be families keep the girls to work, or perhaps the girls are not tested? I think in the older portion of this younger group there may only be 6 girls. They were all in the little dining room and it was stark how obvious it was that the boys outnumbered the girls. The babies were all in a small room and sitting in bumbo chairs (http://www.amazon.com/Bumbo-402-Baby-Seat-Blue/dp/B0007ORN7M) and seemed to be happy and well cared for. Pudgy little folks. I was able to interact with a child who will be coming home to a family in Denver—hopefully soon. A nurse gives meds at 6:00 pm before dinner. The kids line up alphabetically and are given the meds—they do not fight it and it goes smoothly. I shared my concern that filling a belly with lots of liquid antiretrovirals may make a child lose his appetite for dinner or breakfast.

Big AHOPE is for kids about 8+ to about 16. The thing is there is no more room at big AHOPE so as this occurs more of the 8 and 9 years olds are staying at little AHOPE. Big AHOPE is also for double orphans and they get all of their care and meds there. They go out to their different schools. They no longer are schooled onsite. This is an improvement. They have a new "Dean,” a nice fellow who gave us the tour. He is working on developing life skills, and creating a more stable, constant environment for these kids (45 kids—only 15 girls). He lives on campus and his room is right next to the boys’ dorms. These rooms are small and somewhat crowded—though better than some orphanages (and worse than others). He is there 24 hours a day. He is kind of “on watch” at night as well. His words: "very important tobe here at night." Kids get their meds by the same nurses as at Little AHOPE—but at 7:00 pm, after dinner. They give the nurses a very hard time, and they are finding the same issues with adherence in this adolescent community that we do in the states. We spent quite a bit of time on adherence education.

Over the past few years, they have had some kids who have had some family members come forward, and those kids have gone home. They have become part of a community project. They found this was not as successful as hoped with just a single monthly home visit, and so they now visit them twice per month in their communities, and the families come once to AHOPE per month—so 3 times a month they check in. They provide a meal package for the child, although it is often eaten by the whole extended family, and the child ends up with adherence issues. Therefore, they decided they needed a new program, so they started The Child Development Center.

The Child Development Center is a place where kids who live close enough come every day, 7 days a week, from morning to night. They gets meals, school fees, medical help and psychosocial support from AHOPE. This program has been very successful—they quite literally have a van which goes around and picks up all the children. If they live too far, they are part of that previous program I just mentioned. I have the numbers written down but my memory is that this serves about 75 children. They are very proud of the success of this program. And I was impressed by how well they are meeting the needs of children with HIV so they can stay in their families. Many of the kids attend the WWO school and also other local schools.

The newest program, which is not yet implemented, but it sounded like it was soon to be implemented, is a transition program for the older youth. The children who are about ages 13- 16 will be moved into condominiums in the community. It’s modeled after the SOS Program. http://www.sos-usa.org/About-SOS/Pages/default.aspx. The SOS program is a family centered program for orphans. The director, Sidesse, is very excited about this because her hope is that these kids, who will not likely be adopted out of AHOPE, will learn life skills and spend their adolescence in more of a family environment. There will be one person who will work 6 out of 7 days a week living with the kids and tending to them, caring for them and teaching them. They will be in small groups of about 6-8 kids.

They chose 13 as the cut-off age because there is this slow-down with adoptions (which many of you know about )and with that slow-down it will be almost impossible for a child 14 and older to be adopted by the time they are 16 (which is the legal age limit of adoption in Ethiopia). I asked if they were bringing these concerns to Ministry of Women’s Affairs (MOWA), and they are. There have been many discussions about how many of the oldest children will “age out” before being adopted, unless they are identified by 13, or 14 at the latest. These kids in the transition homes can still be adopted—they will still show up on a list of waiting kids—but they are going to be very careful not to plan for an adoption because it’s so unlikely. So, the kids will not have any unrealistic hopes for families who may never come. But, if a family does want to adopt one of the older kids, they can still do that. This program has not yet begun and has its obvious merits—a place to learn to cook, clean up after yourself, give your own meds, take charge of your own health care, and to function in a smaller "family" like setting. But as with any new program there will surely be challenges along the way. I also would imagine that for those kids moving out of AHOPE—the only place many of them even remember—this could be a bit frightening. But surely it’s better than suddenly turning 18 and finding yourself on the street all alone!

Of note, the new Dean of Big AHOPE has also made some big changes in the last month. The kids now have to clean their own rooms and make their own beds and help clean up after meals. This was something they had never done before, and he has met with considerable backlash. But a month into it, he is finding it very successful and has even identified some leaders among the kids who really have matured and have taken on extra responsibility. He was very proud of this.

Finally, I have many pictures of the kids which I cannot post. I want to thank the 2nd graders and kindergarteners at Westerly Creek who donated so many band-aids and supplies to AHOPE and the other orphan projects I have visited. I also want to add that if you are adopting a child who is waiting for you at AHOPE—please email me as I might very well have a photograph of your child. I took quite a few, and a few short movies as well. God bless all of you who are adopting a child from AHOPE or any of the other agencies here in ET. I know the wait must seem unbearable, and having been here and seen the kids, I really feel for you and for the kiddos.

Hypothetical Michael

This post is not from Emily or Michael. It is from Michael's brothers and sisters left behind in the U.S., who have been looking at pictures of Michael in Ethiopia, and noticing how excited and pleased he seems in every one, and who are beginning to worry just a little bit that he won't come back, and if that happened, how terribly they would miss him. In fact, they already miss him, and because things don't seem quite right around the supper table, they created a temporary stand-in, whom they have dubbed 'Hypothetical Michael.'

I wasn't there during the creation of HyM, so I can't really speak to the strange fact that his "face" has a picture of both Michael and his younger brother. However--and this is pure speculation on my part--it might have had something to do with Yabsera being jealous that Michael's face was being stuck to a soccer ball and not his.

Anyway, this is what his sibling stare at, longingly, during breakfast, lunch and supper.

Come home soon, Michael Michael Motorcycle!

Visiting the Fistula Hospital in Addis

This morning we visited the Fistula Hospital (http://www.hamlinfistula.org/). This is the same one from “A Walk to Beautiful” (http://www.walktobeautiful.com/; http://www.pbs.org/wgbh/nova/beautiful/) and the one Oprah Winfrey has supported (http://www.oprah.com/spirit/Inside-the-Fistula-Hospital_1). I can honestly say it’s one of the most impressive organizations I have ever seen. It is so comprehensive it’s amazing. They support women who have developed fistulas from birth and other traumatic experiences. All of their care costs nothing to these women—they come from all over Ethiopia after being shunned by there communities and their families, often after having lived in small huts, alone, due to the odor because of the incontinence. They develop foot drop and contractures from lying in curled up positions on dirt floors for months or years. They are malnourished due to the fact that they eat and drink very little because of the incontinence.

They come here and they are given nourishment, physical therapy, surgery, post-operative care, and education. They learn to make handicrafts, which are then sold and the profits go back to the women. And one of the most important things is they receive counseling and education about their condition. The emotional toll of losing a baby after 5 days of horrible labor and then the months or years of pain and discrimination takes a great emotional toll on these women—many who are very young, but really they are all ages. The woman I spoke with said the emotional counseling is often more important than the physical therapy.

The PT room had the birthing balls and exercise bike and heat lamps for contractures. It was amazing, and they had ‘before and after’ photos of women which would just blow your mind.

We saw the post-operative ward and the pre-operative ward. The other incredible aspect of the hospital is that they only require two things of these women in return for the weeks or months of care (it’s different for everyone, but the average stay is 34 days). First, is that they go back to their village (they provide the transportation) and tell everyone they know about this place because usually the referrals come from the women who got care. Second, is that when they become pregnant they must return by the time they are 6 months along. They will get nutrition and care and education and will deliver their baby by C-section at a hospital here in Addis so they do not damage their repairs. We also saw the maternity ward, where there were pregnant women and women with young newborns as well.

They also have a midwifery school, and this is on another campus where some of the women whose repairs were not fully successful live and work a trade and run a cafe. We may visit there later this week. Midwives require 4 years of training, and through this institute it is free if they are willing to work in a rural area for 2 years after graduation. They have 4 satellite centers in various regions of Ethiopia.

The hospital has a 95% success rate, and the other 5% are able to stay and live on that satellite campus. Those women may have ongoing ostomy care needs (http://www.ostomy.org/ostomy_info/whatis.shtml) that would be difficult to provide in a rural village.

The school room, counseling offices, and various wards were all so impressive, and all of the women were so well cared for and it really warmed my heart to see how one couple could reach out to a group of some of the most marginalized populations in the world and TRULY make a profound difference in their lives.

We will also be visiting AHOPE later today. I look forward tp sharing about that trip soon.

Love, Emily

What A Day We Had

Again on someone's laptop which costs them money and so I can’t type as nearly as much as i would like So, very briefly—what a day we had!

One thing I neglected to mention in my last message was that we were NOT able to meet Michael's brother. That was a shame, because we came all that way, and if we had one more day, and a little more stamina, we might have been able to make it happen. But we just couldn’t swing it.

Today was so precious. Our first visit was to family who are cousins of Yabsera—but really the direct relatives of the Daubenmeir’s little girl: her father, her family. We were there a long time, so I have many photos and stories for them. I spent the day with Fitsum’s father (handsome guy—and with two daughters and a son, younger than Fitsum . . . all so beautiful).

Then we went to Yabsera's home. When we walked into the home of his grandmother, they all started chirping, "Lululululululu" . . . kind of a high—pitched song of excitement. I can report that his Ethiopian family is "so Yabsera.” His grandma kept kissing me and was so sweet and looked just like him. Not kidding. His grandfather has passed away (I just realized I never asked what his name was). But wait till you see her—so sweet, so amazed at seeing his pictures. I also met his uncles and some aunts.

Mulu (Yabsera’s first mother) recently moved to Khartoum, only about two weeks ago. I just missed her, which made me very sad, and when I heard the news my heart sank a bit. But then we were outside the round mud home taking some pictures and I was getting "Mulu's family" together and they pulled this little boy into the picture and I said, “who is he?” And they said, “he is Mulu's son.” So, yes, I met Yabsera's brother! Mulu’s first son. He is just a little older. They first said he was 6 and later said 10. He can’t be much taller than Yabsera . . . very handsome and very shy. I did get him to smile and showed him pictures of his younger brother, and I have photos of Michael with him. So, a little surprise that apparently Tshay didn’t even know about. I asked what he was like and they said, "he likes football, riding a bike (never saw a bike in Sodo, so not sure if the interpretation was right) and he likes to eat food and drink milk. Sound familiar? Before we headed back, they all sang for us and I can’t wait for Yabsera to hear and watch this—he would have joined right in singing and dancing.

When we got back to Sodo, we went to a home-visit and saw the baby, Tamrat (from the Miracle Baby series on Sophie’s blog that I link to in one of my early posts on my blog). The experience was just amazing, and I can’t wait to write more about what they do here at the hospital and in the clinic. It’s very exciting and quite amazing and frankly hard to even believe. This baby should not be alive but is thriving and I will show you pictures.

So Michael has had a few days of full exposure, up close and personal, to what his life might have been like. On the way home, we bought mangos and bananas. He was eating a mango (his 3rd) and he just said, "I am so lucky." I said, "because you have a mango?" And he said, “yes, I am lucky for three things: that I have this mango, then the 2nd reason is because I was adopted, and the 3rd reason is because I have you and daddy." I think all of what might have been sunk in. I was quick to tell him that in fact Mark and I were lucky, and he asked why and I said, “because we have you and Yabsera and that makes us so incredibly lucky.” (We also like Maddie, Cal and Phoebe, so blessed all around!) But I do feel so lucky for these boys that we brought home 5 years ago. Michael has been so good with so many hugs and kisses from strangers, and just having to be hot and be around a lot of flies and be really, really patient.

We leave for Addis in the morning. I will see a bit more of the hospital here and then in Addis I have some orphanages yet to visit and may visit again with Dr. Sophie if I can. It has been so interesting to learn about HIV care here in Sodo and I look forward to sharing all about that with my friends at CHIP and HIV To Home.

Michael and I miss you all.

Love,

Emily

Our Family in Wolaita Sodo

Typing from a cafe at the hotel in Sodo on Sophie’s little laptop. I won’t be able to type long, however. In short: we arrived Thursday and met with Dr. Ruth, Sophie and Dr. Stephanie. Just hung out for a bit and gave them many donations which they were very, very excited about.

On Friday we set out in the AM and I was kind of on a mission to connect with the woman we knew about who was related to Mulu—Yabsera's birthmom. We had some phone numbers, and I’ll write the whole, long story later, but at one point we were at this bank where Ruth told us to go which was supposed to have a cafe but did not (turns out the new Dashan bank has no cafe). At that point we called the man who was the father of the Daubenmeier’s kids and he answered and came down. He took us to see this woman at Tsheay's house, and we went there. This is the home where Yabsera was born. This made Michael a bit jealous—because he would like to see the home where he was born.

This woman was very gracious: she gave us shiro and injera and Fanta and coffee with milk. She was happy to see the photos of Fitsum Grace. We all talked a lot—well they all talked a lot and I just tried to listen. So, at some point she said, "I have a photo of Mulu." I was like 'Ummmm . . . can you please show me?” I was trying to contain my excitement. She pulls out a huge album and a photo of not just Mulu . . . but of baby Yabsera, too . . . and, yes, it was so clearly Yabsera . . . his eyes . . . his big ears and the extra little dangling finger. He is maybe 3-4 months in the picture? But so cute, and his mom is beautiful and tall! I can’t wait to show you. I took pictures of this and many other pictures on my camera (many for Fitsum). There was also another photo . . . a baby from many years ago . . . he looked so much like Yabsera that Michael actually said "that’s Yabsera!" However, it was actually the daughter of Teshay. I have a photo of her all grown up. Tomorrow we will actually go and visit with Mulu's parents (Yabsera’s grandparents). His grandfather is a church elder and Mulu sang in the choir (of course!). So excited.

I have so much more to write than I probably have time for. I may get a chance later to write more. Michael has been so excited, and yes, in my exhaustion I have had to say things like, "I know how excited you are, honey, but you have to realize how exhausted I am and please just be quiet for a bit," and he does, God bless him!

We left with Kebede and Dr. Stephanie and went to the market which was so much fun—and a bit scary. We bought fruit and veggies and lentils and a chicken! Michael picked out the chicken, and was very concerned on the bumpy road to his grandfather’s about the chicken’s well being, saying "Ummmm, you know we have a chicken in here right?" as we bumped along. There are many details which I will skip for now, due to time, but Ato Ashango was so happy—when he saw Michael he could hardly contain his joy, and scooped him up, saying, "Maren! Oh Maren!" We were mobbed . . . many people kissing and grabbing Michael. I was admittedly very nervous that Michael was going to freak out, but he handled it all with such grace.

I have so much more to tell, but for now I’ll just tell this story. Later in the day, towards the end we realized there was a cow in Michael’s home and so he wanted to see it so we went into the house and while in there we heard they had just lost their beloved cow . . . yes, this was “Maren’s favorite cow" which we heard about from Heidi, and that we have a photo of. And then someone taps on my shoulder and they gesture down and sure enough there is the hide of "Maren’s favorite cow" spread out on the floor. Stephanie and I could NOT stop laughing . . . I can’t tell you how funny it was . . . for us . . . but not for Michael—this was his favorite cow after all!

One last sweet thing before I have to go—they all told him he looks just like his father. And his mother looked like Ashango. Last night, Michael drew a few pictures of his Ethiopian parents—wanting so badly for the photo that Yabsera now will have and he never will.

I gotta run. Much love to everybody.

Sister's Of Charity

I do not have much time to write because in a few minutes Michael and I will be heading to Sodo to see Dr. Ruth and Sophie and to see his birth family. This is the same drive we took about 8 years ago in search of some answers and to see where M and Y came from. We have been looking forward to this all week. Yesterday we spent with the Sisters of Charity which was a long and rough road out towards the far reaches of north west Addis. In the car was an NP who is here studying some natural pathic remedies and an Ethiopian Pediatrician who does a lot of teaching on HIV in the outskirts of Addis, Bekah, the nurse I am staying with who is working on a TB/HIV project. There used to be a nun who gave the kids a mixture of Aloe and Honey before ARVs were available and she swore by its ability to slow the progression of HIV. That nun is no longer there- but the ghost of the once lively Aloe field shadows over the new clinic where they will only give ARVs and do not believe in alternative or complimentary therapies. The complex where these kids live is absolutely beautiful. They grow their own food. Have a state of the art school on the compound where all 361 kids with HIV who live in the orphanage attend along with uninfected children from the community. Early on they tried to send the kids out to schools which created a stigma- clearly someone very smart and very wealthy said- "hey if we build the best school you can find in Ethiopia - those kids will WANT to come to school here no matter what." and it worked- not kidding the school might as well be DSST its so nice.

The clinic is also state of the art and they have started caring for women ad children from the community. Most of the cases were TB cases. On 16 year old who looked about 5 at the most- no body fat who had horrible disseminated TB. She was left to die for a year before her father brought her in. When she whispered that she was 16 my heart sunk. A baby with congenital cataracts which looked possibly like something secondary in my inexperienced opinion who was waiting to get fat so she could have surgery. She kept kicking her leg as if to say "Would one of you people please do your job and pick me up!" She was darling and as we got close- she knew- because she beamed at us with a toothy grin.

The orphanage itself has a few dorms, some nice play grounds, soccer field and basketball fields. The actual dorms are packed with bunk bends flush to one another. So a long room with 15 bunks right next to each other along each wall- 60 kids in that room...then the next room the same...the next room the same...it never seemed to end. It was meticulous. The laundry system was amazing, the dining halls were all clean, the kids uniforms were like brand new, the kids seemed happy and playing as they left school. It appears that they have taken a horrible situation of having too many HIV+ children without parents and have built the best physical complex they could. But I couldn't help but think as I saw the rows of bed and rows of table that there cannot possibly enough adults in these kids lives to provide them with the love they will need to really make it in the world. All the HIV medicines in the world just wont do the trick if you don't have someone who loves you enough to see you through the tough times and to laugh with you during the good times.

In some was- even though it was beautiful- like the best summer camp you can imagine...it really made me feel sad...because these kids will not get on a bus in August and find a mom and dad and big sister and Brother waiting to pick them up and take them home. They are doing the best they can with what they have. My advise would be to break up those big rooms into smaller family unites with consistent caregivers. They have the land and ability to do this. They have a transition house for the 18 years olds and so far it has not been successful...as you can imagine...but if they started early with a family unit- and those kids grew like family they could all transition together. Better yet- these kids need real families. So I would look into which agencies have started pairing with this agency and go from there- if you are ever so inclined to adopt a child living with HIV that is.