At the End

I am in the midst of 3 days at a great conference on “Epidemic Ethics” that the IU Center for Bioethics is hosting as part of their efforts to train experts in international research ethics. I have participated as a speaker at this conference several times, and they always bring together an fascinating group from across multiple disciplines to consider.

Today, a PhD/nurse/bioethicist from the University of Cincinnati described clinical ethics and his experiences in an Ebola unit in Sierre Leone with Partners in Health last year. He closed with the story of a little girl who he had cared for, loved, and lost. He had written a poem for her, and the cracks in my own heart reverberated as he spoke of the loss of this child whom he loved.

His story made me think of Geoffrey, and I wanted to tell his story again. My last promise to him was that I would remember him and that I would tell his story, and so I will. The loss of G is one of those cracks in my heart that I don’t want to forget.

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G was a special patient of mine in the AMPATH HIV clinics. He was 15 years old, but you would have thought he was a malnourished 6-year-old if you saw him on the street. He only weighed 40 pounds, and his head did not reach my shoulder. G lost his father and then his mother to HIV, and he had the same virus in his blood. The HIV stopped his body from growing and made him sick with one thing after another. Tuberculosis. Pneumonias. Even a type of cancer that grows when the immune system is weak.

Our medicines that fight the HIV virus did not help G as much as they do for most children.   While they suppressed the growth of the virus in his body, his immune system never recovered. It never began to make the cells that his body needs in order to fight off infections. This is very rare (thankfully), but G was one of the unlucky ones.

I don’t know why I loved G so much. Certain children just stick in your heart. I started taking care of him in January at the pediatric HIV clinic at our referral hospital. He was staying in a special shelter where he could be close to the clinic and get both his medicines and food every day.  Most of G’s extended family had washed their hands of this sick, seemingly hopeless boy. His elderly maternal grandmother still cared deeply for him, but she lives in a small rural village several hours away from Eldoret, and her love alone was not enough to sustain him with his significant needs for medicines and food and medical care.

I ended up hospitalizing G in March, and he stayed on the wards for 3 months with one sickness after another.   Visiting him every day on the wards and arranging whatever consultations and procedures he needed became part of my daily routine. I brought him whatever treats he asked for. Pineapple. Fingernail clippers. Photos. One of the other pediatricians and I half-joked that the best thing we ever did for G was probably to bring him fruit.

I did love him, this tiny sick boy with big eyes and a sweet manner.

At the end of June, G was as sick as ever, and he began to ask to go home. Not to the shelter, but to his grandmother’s home in the village. He asked in a way that he never had before; it was not just the plea of a frustrated child who has been in the hospital too long, but an urgent request.

I think he knew that he did not have much time left, and he wanted to spend it at home. We had given him the best medicines we could come up with in the hospital for his infections, but we couldn’t give him a new immune system. It seemed like it was time to do what he wanted. To let him go home, knowing he probably did not have much time to live.

There are virtually no services for Kenyan children at the end of their lives. A recent report from Human Rights Watch details how Kenyan children in pain suffer because government policies restrict access to inexpensive pain medicines and because there are not the kind of palliative care services and healthcare workers really needed to care for chronically ill children in pain. G could at least access some care through AMPATH, but there wasn’t much I could do for this final part of his journey besides send him and his grandmother home with the right medicines (and a few bags of groceries and my goodbyes).

I don’t know how things went for G at the end.

I did not hear about his death until a member of his family returned to Eldoret a few weeks later. G died a few days after he went home.  He had walked for me before he left the hospital, which he had not done in weeks. We took that picture up above on that day. G was proud to be standing up, and I loved seeing him smile.

We said our goodbyes, and he was so, so happy to be going to his grandmother’s home. He had left saying that he would be going to a better place. I think he knew what that better place really was –  in his heart, on multiple levels. That is my hope for him.

Goodbye G. I promise to do what I can to make our care system better at helping children like you, children at the end of their struggle with this virus. I promise to remember you and to tell your story, just as I said that I would.

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Headlines

I have not wanted to write here. I couldn’t bear to go from my happy, first-of-April post full of excitement and optimism to talk about what happened the next day. The terrible day after and its terrible headlines.

On April 2, gunmen from the Somali militant group al-Shabaab stormed into university dormitories in Garissa, Kenya and killed 147 university students. The al-Shabaab gunmen want to spread terror in East Africa over Kenya’s support to the African Union’s fight against al-Shabaab in Somalia.

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A terrible and tragic loss of young and promising lives.

Everyone is asking me how this impacts our partnership in western Kenya. It’s really hard to know right now. Garissa is on the border with Somalia, in the northeast corner of Kenya, and this town is about as far away as it is possible to get from Eldoret and still be in the same country – more than 300 miles. Travel to Garissa has been banned by the US Embassy and by IU for more than 2 years because this is known to be an unstable and risky place.

The attack in this place has not changed the threat level as measured by the US Embassy or our security evaluators or our field team on the ground. But, there is risk and there is worry and, in fact, our university has decided to suspend student participation in our program for a time.  I disagree with this decision on multiple levels at the time being, but this is the current state of affairs and I am pulling the trainee part of my team.

Of course, there is a much greater tragedy than this damage to our educational mission; we are all wrestling with the loss of these young people, part of East Africa’s future. We struggle with horror over this brutality – and the seemingly ineffective government who systems are crippled by corruption.

In contrast to all of the headlines about the attack in Kenya, I am trying to talk about (and work for) specific headlines from the work we are doing to improve global child health. Though it is no replacement for violence that steals young lives, our research work is revolutionizing how we keep children alive and thriving around the world.

These are our own headlines:

IUSM saves 150000 lives

Newborn Sepsis

Monitor Adherence

20000 Orphans

It is working on these advances that keeps me working long hours and fighting for our program to grow and jumping on planes to do the things that I can do for our kids in the world’s poorest places. It’s these headlines that my amazing team of Kenyans and Americans are pushing forward on the ground in Kenya every day. They are caring for families at eleven of our clinics by constantly working to figure out what will improve the medical care in those places and beyond.

The former ambassador, Scott Gration, offers this take on the important alternative headlines:

Kenya is a country with a bright economic future; it has so much potential. Its citizens are smart, well educated, and hard working. Kenya has a great location with breath-taking landscapes, gorgeous beaches, and perfect weather. This country is blessed with magnificent mountains; beautiful valleys, rivers, and lakes; valuable natural resources; precious national treasures. It’s a paradise for tourists.

If the media coverage on Kenya is all about terrorism, the terrorists win. That is their objective.

Seven of the world’s ten fastest growing economies are in Africa and many believe Kenya is the “new front door” for the continent. Investors who know Africa are bullish on Kenya.

Our headlines are hidden and some of them take quite a while to develop what we need to change health, but those headlines are there. Those headlines are real examples of how our research work has changed health in Kenya. We mourn for the losses of our children in Kenya. And we fight to keep the rest of Kenya’s children alive and thriving.

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April Amazingness

I love it when new possibilities open up to improve the health and well-being of our children living with HIV!

Here are 3 new and exciting things that just developed in my world to begin April (not fooling!):

1. More film-making! My team is partnering with our talented friend, Thomas Lewis, to make more films in Kenya to benefit our youth and families living with HIV. Our goal with this new project is to produce a series of short, dramatic films that target the issue of living in a place where those with HIV are stigmatized and discriminated against. Through the efforts of our multidisciplinary team, we now have 2 grants to make this film project possible. We have been working on scripts based on the stories of our youth and families, and we plan to start filming in June. I can’t wait to have these films as a tool to use with our kids, families, schools, and elsewhere in the community. Hooray!

Thomas and I after a day of film-making on our first project in 2013

Thomas and I after a day of film-making on our first project in 2013

2. Under Armour amazingness! I got a rather urgent call from my administrative assistant today about 2 pallets of boxes arriving at my office. (For those of you who have never been to my office, it already resembles a storage unit as it is inevitably packed with supplies to bring to Kenya.) Through the great work of The Pocket Square Project, Under Armour sent us a ton of brand-new sneakers for our kids in Kenya! They are amazing, and I know that our adolescents are going to love them. Somewhere in the piles of boxes, there is also some other athletic gear too. I can’t wait to share these things for our healthy living – youth activity days this summer. Now, we just need to carry them over to Kenya…

Oh my word! Look at all this stuff! The kids are going to be thrilled.

Oh my word! Look at all this stuff! The kids are going to be thrilled.

3. Working on improving children’s adherence to HIV medicines around the globe! The last few months have been a whirlwind of travel with launching the new projects on children’s adherence in South Africa and Thailand, and then participating in global meetings on adolescents with HIV in Italy. I also am writing a new grant proposal to expand this work. Plus, there’s something much bigger in the works that I cannot announce yet, but am very excited about.  AMFAR and TreatASIA featured our Thailand launch on their website and in their newsletter.

With our team at the Thai Red Cross HIV Research Centre

With our team at the Thai Red Cross HIV Research Centre

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Bangkok Beauties

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I am behind in posting and on my way to yet another country, but I have to share some of my favorite shots from glittering, colorful, crowded Bangkok. The city was dense with people, smog, heat, and humidity, but around each corner emerged a bright temple or wat or shrine, with red tiled roofing and glittering gold statues, the smell of incense offerings and bright flower wreathes piled at the feet of Buddhas. It was a fascinating place. What my camera saw…

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Bangkok: Launching our project with the Thai Red Cross HIV Center

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My latest research adventures brought me to Bangkok, where we launched and trained another site for our project to figure out the best way to monitor children’s adherence to HIV therapy across sites around the world. I really love seeing this work expand across the global sites providing HIV care.

The Thai Red Cross has been caring for patients with HIV in Bangkok since 1985. They are true pioneers in what it means to provide HIV care for patients in poor places. In the Thai Red Cross HIV Research Center, they provide care for a large number of children, adolescents and adults who are also enrolled in key AIDS research studies. Most of their children are on the older end because they have been providing HIV care for so many more years. This makes them a great site with which to work to figure out the challenges of transitioning children with HIV into adolescence and adulthood.

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Not only was this site well-equipped to launch our new research project, but they enthusiastically welcomed me to do teaching for two of the medical schools in Bangkok about pediatric adherence to HIV therapy. Moreover, the Thai Red Cross team hosted us with great enthusiasm, making sure my program manager and I saw the highlights of the city and ate, ate, ate our way across Bangkok. Such fun.

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