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.

Posted at 05:14

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 again.


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.

Posted at 05:12

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.

Posted at 04:01

On Langston's Birthday...

When peoples care for you and cry for you, they can straighten out your soul. - Langston Hughes (b. February 1, 1902)

 

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Three generations sit in front of me, in two plastic chairs on the other side of my wooden desk in the clinic exam room.  Toddler, mother, and grandmother.

Outside of this room, at least one hundred families wait on benches to see the clinicians at this rural HIV clinic. A rooster is crowing loudly just beneath my window. But inside this room, it is me and the quiet females spanning three generations of a family.

Mary, the grandmother, holds 3-year-old Grace in her arms. Little Grace is quiet and subdued, a too-skinny toddler looking at me with big eyes. She is holding a strip of colorful stickers I have given her, but she is not yet ready to make consistent eye contact with the scary white doctor. Next to them, Grace's mother Florence also sits quietly, holding a brown purse on her lap that contains 6 medicine bottles - two for herself and four for Grace.

All three generations of women before me are infected with HIV. Both Mary and Florence were infected by their husbands. Mary's husband died a year ago, and Florence's husband left her when Florence started to get sick. She thinks he is working in Nairobi, but she doesn't know for sure. Grace's infection passed from her mother's body into her own during Florence's pregnancy, before anyone knew that Florence had HIV.

Three females with three beautiful faces. And, truly, they are the faces of HIV around the world - women and children, living in poverty in the world's poorest places -- marginalized by their gender, by their economic opportunities, by their lack of education, and by their infection.

We could have prevented all of these HIV infections.

If Mary or Florence's husbands had worn condoms or had been taking medicines for HIV, the virus would not have passed to their partners. If Mary or Florence had taken one pill of HIV medicine a day - something we call PREP - they would have been protected against getting infected, even if their partners were not treated and even if they didn't use condoms. If we had known that Florence was infected with HIV when she was pregnant, we could have spared Grace by giving Florence medicines to take during her pregnancy, delivery and breast-feeding. We know how to stop these infections.

We know how to stop the spread of this virus, but we have to find ways to give even the most marginalized women the knowledge and power to stop this virus. We need the political will, we need the money, we need the empowerment.

This family sits before the pediatrician because Grace has been coughing and coughing, and they are worried about how poorly she is growing. I am worried too, and I get an x-ray and start her on some medicines for pneumonia.

I can treat this pneumonia. I can give them the right HIV medicines to keep their virus sleeping and keep their immune systems healthy. I can try to get them food support and even entrance into our microenterprise opportunities. I can continue my work to make this a healthcare system that serves well the needs of 150,000 patients with HIV.

I wish, though, as I sit with these generations, that I could go back in time and put the right prevention in place. I wish for what I cannot do.

As Mary stands up, strapping her granddaughter to her back, she turns back to me and says, "Asante, daktari. (Thank you, doctor.) Thank you for your care for us today."

Posted at 02:31

Sick Babies and Tear Gas

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Monday mornings are always a bit insane in the clinic - lots and lots of mothers lined up, sitting on benches to wait with their sick babies. Everyone holds on through the weekend with their sick little ones, eager for the clinic to open on Monday. After less than 10 minutes in the clinic, I had to put in an emergency IV and start resuscitating a little one.

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Our day went beyond the usual Monday chaos with some added craziness. The nurses at the hospital were on strike. Health care workers striking is not good for patients, but it too-often seems to be the only way they can make the hospital administration meet their very reasonable demands for appropriate drugs, gloves, and medical supplies.

A peaceful protest cannot last very long here, sadly, as demonstrated by the horrific crackdown of the police on school children protesting the destruction of their playground last week. Sure enough, the Kenya police showed up today in riot gear and decided to disperse the nurses using tear gas. Insane. The tear gas came in all through the hospital buildings and clinics, making everyone wheeze and cough and gasp even in areas relatively far away from the demonstrators.

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In our busy clinic, we didn't know what was happening at first. Your throat begins to burn, your lungs are closing up and wheezing, and you can't stop sneezing and crying. Tear gas is horrible.  And very, very bad for sick babies. So, that was a disaster to sort out as I tried to keep breathing well enough to make sure everyone was ok and get the sickest little ones moved to where the gas was thinner. Our babies already come in breathing too-fast with their pneumonias and fevers. Tear gas was the last thing we needed.

On top of all of this, the main washing machine at the hospital had broken down over the weekend. This doesn't sound like such a big deal, except that we had no clean linens or scrubs or gowns. This basically shut down all of our surgeries for the day, and made things more complicated for dealing with really sick patients who needed new beds in units that were closing down for lack of linens. Plus, many more patients needed gowns to replace clothing contaminated by tear gas or would have benefited from wet clothes to hold over faces.

BUT, not a single patient of mine died today, and so in my book it was not a bad day. Bad days are days when children die. This was just a crazy one.

Posted at 07:39

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