Cape Town

I am a bit behind in my travel documentations, but I cannot neglect the beauty of Cape Town. I had always heard the Cape was beautiful. In the midst of busy weeks of setting up projects to follow children’s adherence to HIV medicines, escaping for a weekend in this glory of the water and mountains and sky and sunshine was pure delight.

I felt like Cape Town was constantly showing off — just one ridiculous scene after another, each sunset and sunrise and beach more spectacular than the next.

My camera and I loved this glory.

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Research Fun in Johannesburg

For me, the whole reason to do health research is to figure out how to make healthcare work better. I wanted to know what would work. I ended up in global health research (As an English major! Who hates statistics and math!) because the issue of how to save the lives of children in the poorest parts of the world was critically important to me. I wanted to tackle big, giant problems killing children and I wanted to know what solutions would really make a difference.

I wanted to figure out how to best care for children with a really complicated disease who are growing up the poorest parts of the world. If you can create a healthcare system that can do that, you can do anything. That’s why I do research.

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This week has been a really exciting step in seeing those dreams come into fruition. For years, I have been struggling with the challenge of how to know which families in Kenya are having the most problems with maintaining HIV therapy for their children. We know it’s a major challenge to have a child taking 3-4 different medicines two days a week for the rest of their life, and we need to know how we can help families with that challenge. We have studied this like crazy in Kenya. Now, we are starting to look at the rest of the world’s HIV programs.

I chair the global consortium of programs providing HIV care for children (called IeDEA), and we want to figure out a consistent way to measure children’s adherence to HIV medicines for HIV care programs around the world. This week’s exciting step for that has been to test out the procedures we have been developing in Kenya, and to see how they do when you use them at other sites in East Africa, South Africa, and Asia.

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Launching this new project at the Rahima Moosa Children’s Hospital in Johannesburg, South Africa has been ridiculously fun. All week, my program manager and I have been doing training sessions here in Johannesburg and learning about this clinical system — all to get ready to launch an HIV medication monitoring project here.

They have a lot more resources than our clinics in Kenya, but they also serve a very poor population of children and their caregivers. Spending time in the largest child HIV clinic here in Johannesburg feels like home; bring me to the children and families struggling with HIV in the poorest parts of the world, and I am among my people. (And I can speak to these families in English! Such a delight for explaining things!) The South African clinicians and I have bonded over our shared challenges.

Johannesburg has more resources than Kenya (And roads! And wine! And shopping!), but they also still have a major HIV problem here. Among the pregnant women coming to the largest mother-baby hospital to have their babies, 1 in 3 has HIV. ONE in THREE pregnant mothers. HIV is still everywhere. Passing this terrible virus into the bodies of beautiful babies and children.

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I love new ideas, and of course, new ideas are born daily when I am among my kindred hearts. We keep dreaming up more and more ways to collaborate across Eastern and Southern Africa to help our families. We struggle with so many of the same challenges. And we want to answer questions about what will work and about how to provide better care for families with children with HIV.

Long days, but fun, fun, fun.

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I want a magic wand.

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If I had a magic wand, I would give Wangari parents.

Wangari is small for her 8 years and getting smaller. She is a frail, meek girl who sits quietly on the chair in front of me in this distant, rural HIV clinic close to the border of Kenya and Uganda. She is wearing filthy, tattered clothes and smells of the kind of deep poverty that makes one pay attention in even a very poor place.

Wangari lives with her grandmother, a woman too old and weak to make the journey to HIV clinic, and so she was brought in for this appointment to see the visiting pediatrician by a neighbor.

She really should have been started on the medicines to fight the HIV virus quite a few months ago, but without a mother or a father to take responsibility for giving her medicines — with only this ancient grandmother — no one was sure that she should be started on HIV medicines at all.

On this day, lacking my magic wand, but having a fairly magic prescription pad, I decided we didn’t have any other choice. Wangari is losing weight, and her body is being taken over by the diseases of the skin and mouth and lungs that sneak in when your immune system is non-existent.

I talked to the neighbor for a long, long time, drawing pictures and asking questions, trying to determine if she was really serious about helping this little girl take these 4 medicines twice a day and if she understood the weight of this treatment. She needs these medicines every single day. Let’s see if there is any possible way to make this happen.

With these medicines, Wangari will grow again. She will be able to laugh and play and go to school. These medicines mean a future for this little girl. But who will give them?

I tried to involve the social workers to follow up with a visit to Wangari and her grandmother. I tried to convince our nutrition support team to make sure there is enough food, but I just don’t know if this will be enough.

Wangari’s little body was covered with scars collected over a childhood of no one caring too much what happens to you. I wished I could erase her scars. I wished for a magic wand.

But if I REALLY had a magic wand, I would use it for the emergency…

From my imaginary valentine, Bono, a few years ago:

I became the worst scourge on God’s green earth, a rock star with a cause. Christ! Except it isn’t a cause. Seven thousand Africans dying every day of a preventable, treatable disease like AIDS? That’s not a cause, that’s an emergency. And when the disease gets out of control because most of the population lives on less than one dollar a day? That’s not a cause, that’s an emergency.

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Bearing Witness

Almost every day in Kenya, I see things that I don’t feel I can write about here.

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I try to be honest about my work, but I don’t want this to be the sick-and-dying baby blog. Sometimes, even I am overwhelmed by my inability to help, my inability to make things better. I don’t want to overwhelm anyone reading this too.

It is bad enough that I see babies starving and dying. I don’t want that to be the only picture I share with you of this place that is beautiful and broken in equal portions.

Even beyond that are the terrible things that cannot be described for reasons of privacy, legality, and sheer horror – the beating, burning, raping, maiming, and neglecting of children. Every pediatrician sees cases of child abuse in all its horrific manifestations. Every pediatrician mourns the tragedy that not all adults act in ways that promote children’s health and well-being. I don’t write about those things, but I see them all too often.

Grinding poverty adds a layer of despair. There is just so much that seems beyond our reach. I struggle with the weight of this some days.

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I read something powerful this week, on the Momastery.com blog, while in the midst of traveling from one remote, rural clinic to another. As I struggled over the ways that poverty and illness and evil mar the lives of the beautiful children in front of me, these words were really, really helpful to me:

We don’t need our lives to be different, or easier, we just need someone to see the pain. To know what we’ve faced and overcome. To say: Yes. I see this. This is real. We don’t need a magician to take it all away – we just need a witness.

Sometimes, there are things that I can do as a doctor to make a patient better, to bring healing and health. Sometimes, there are things that I can do as a researcher and an advocate to change healthcare systems and to put services in place that are desperately needed. I am grateful for those times. I love my job so much because it affords me with so many of those opportunities. All that is within me wants to make things better.

But, sometimes, I cannot make it different or easier or fix it.

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It was an important reminder to me that there is value in bearing witness. I see. I write. I tell your story. I carry the image of the injustice you have borne. I tell you that it is real, even if it is only through my doctor’s touch or my eyes looking upon your broken body. I witness YOU, marginalized child without a voice, suffering in a forgotten corner of world. I see you.

Lord, help me to have the grace to bear witness.

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Kimbilio

Among my travels this week, I spent some time at the Kimbilio Hospice run by my friend Juli McGowan through her ministry, Living Room International. Kimbilio mean “refuge” in Kiswahili.

I have written about this refuge and about Juli before. Juli is a wonderful nurse practitioner who has built this lovely place where very sick, poor forgotten people — people seemingly beyond hope – receive care and have a resting place .  Some of her patients do die in her hospice care from terminal illnesses, but they have someone tending to their needs and keeping them comfortable. Others, like her assortment of severely malnourished children, can actually recover and have somewhat normal lives if someone goes through the immense work of feeding them and helping their bodies and spirits to recover. This is not my area of expertise, but I’ve promised to help her whenever and however I can.

Our team at Kimbilio this week. Visiting developmental pediatrician (and legend), Marilyn Bull; me, and Juli.

Our team at Kimbilio this week. Visiting developmental pediatrician (and legend), Marilyn Bull; me, and Juli.

After seeing some very sick and sad little children, I spent some time with a patient who Juli first had me see back in 2011. Juli and both remember looking at this child and looking at each other and thinking, “What on earth can we do?” I did not think this little girl was going to live, and we were really taking it one day at a time with her.

This is what I wrote about her then:

The Living Room currently has a very sick 8-year-old girl who weighs only 13 pounds (6 kilos!). Frail little C came out of a horribly sad situation, where she has not received the care she needed for a very long time. The extent of her weakness and malnutrition were among the worst I have ever seen, and it is a struggle to imagine that her body could recover from this. The general idea at the Living Room has been to hold her and to feed her (which has to be done through a very careful process when a child is this malnourished). So far, the small steps seem to be sustaining her. Even more amazing is C’s sweet personality. Despite being too weak to lift her head, she will smile when someone calls her name. And when one of the caregivers holds her and sings to her, she laughs softly. Small steps and even this damaged body may have hope again.

Little C, smiling despite all, in 2011:

Well, C lived. She is still at the Kimbilio Center, and she still smiles and laughs. They have taken excellent care of her. She doesn’t have the ability to move very much, but when you talk to her or sing to her or touch her face gently, she smiles the very biggest smile and laughs.

It is a joy that she lives. And, in her own way, she lights up a room.

C, this week:

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