Kenya Gala

Sierra (OB/gyn genius) & I man the Maternal Child Health booth at the 2010 Kenya Gala.

Sierra (OB/gyn genius) & I man the Maternal Child Health booth at the 2010 Kenya Gala.

I have the privilege of working in Kenya through a partnership that Indiana University established to revolutionize healthcare for people in some of the world’s poorest places. Indiana University partners with Moi University in Kenya to demonstrate how global health can be improved through an academic partnership for clinical care, education, and research. My own work to improve HIV care for children in poor places is all done within the context of this partnership.

While we have a lot of sad and scary news coming out of Kenya this week, our 20+ year AMPATH partnership also has a lot of great successes that can be celebrated. Healthcare systems changed.  Lives saved. Lots of GOOD stories.

Every 3 years, our program holds a big gala event in Indianapolis to celebrate the work we are doing with our friends and supporters. If anyone who reads this blog wants to attend, I would LOVE to see you there. You can register at kenyagala.org

Kenya Gala 2013 Invite

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Risk

I have been struggling this weekend, unable to tear myself away from the terrible news and photos from the events in Nairobi. Amidst so many stories of violence and shootings, this one felt very close to me.

Good friends of mine, one of whom works for me, were trapped in the Westgate Mall as the attackers brought violence and terror. Thankfully, my friends were among those who eventually escaped safely. Many of my other friends were nearby, and this is a place that I have been to many times myself. I am so, so, so grateful that my loved ones are safe.

Still, my heart is heavy. And even though I know that I am jet-lagged and tired and this makes everything seem more dim, this attack is sad and scary news. I struggle with how to help my team process this trauma, with being far away, and even with the what-ifs.

And yet…

I am reminded of this:

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We go out into the world and we risk engaging with all that is painful and terrible because there is so much that is beautiful and precious. We risk the terrible because of the beautiful. We keep taking steps in the darkness because we trust that there will be light. And we need each other.

Trusting in light.

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Wordless Wednesday: The loveliness that grows here…

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Repeats

I met another G today.

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 weighed less than 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.   His 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.

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Me, G, and his grandmother on the pediatric wards of the hospital. The first day he stood up in 2 weeks.

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.

Today in clinic, I met Noah, another boy whose immune system does not seem to be recovering despite our very best attempts. 10-year-old Noah, weighing just 11 kilos, with a body that is STILL not making any immune cells to fight infection. I wracked my brain for ideas for any other drugs we could possible try to get his body to recover. I kept thinking about G.

“Not again, not again,” I thought.

 

I don’t know why I loved G so much. Certain children just stick in your heart. I started seeing G in January of 2010 in 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 his significant needs for medicines and food and medical care.

I put G in the hospital 3 months after I first saw him in clinic, and he stayed on the wards for 3 more 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 2010, G was as sick as ever, and he began to ask to go home. Not to the shelter. “Home,” he said, looking straight into my eyes. He wanted to go 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 here 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. At the time, there were virtually no services for Kenyan children at the end of their lives. G could 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. He died a few days after he went home, the same day I left the country. He had walked for me before he left the hospital, which he had not done in weeks. He was proud and smiling and telling me that he wanted me to bring him a bicycle from America. We said our goodbyes, and he was so, so happy to be going to his grandmother’s home. He left saying that he would be going to a better place. In his heart, I think he knew where he was going. That was my hope for him. A better place.

When I sent G home, I promised him silently that I would do what I could to make our care system better at helping children like him, children at the end of their struggle with this virus. I have been trying. But as I saw Noah today, I found myself questioning whether we could do any better than I had for G. Frustrated by my lack of medicines, my lack of options.

And yet…

Noah is getting the best set of HIV medicines and TB medicines that we have available for kids of his age. The clinicians at this clinic where we are working intensely are very attuned to helping children sustain their HIV therapy over the long term, and they have made exactly the right choices for him. They wanted me to review his case, and there was not much more I could offer. Even better, Noah is receiving food supplements and the most patient, loving care that we can get him at my friend Juli’s wonderful hospice center, Kimbilio.

And so I tell myself that things are getting better, even when I cannot do much more to stop this repeat besides hoping and praying.

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Twin Gifts

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Rose sits down on the chair next to my clinic desk with her arms full of toddlers. Her 18-month-old twins, a boy and a girl, are determined to head in different directions in the clinic, and she is struggling to rein them in.

To help her – and to make friends with my patient – I pick up the little girl, Elizabeth. Elizabeth’s short hair has been carefully twisted into tiny, 1-inch braids all over her head. She has enormous eyes that immediately make you think she will grow into a great beauty.

I pull out some stickers from my pocket to woo her with bright smiley faces, and she quickly puts them all over her hands and mine.

Her twin brother, Kyle, sits more calmly in his mother’s arms, watching me with matching big, brown eyes. I hand over some stickers to him as well, and he smiles at my little gift.

Then, I get to give their mother a much better gift.

Rose has HIV, but during the entire time that she was pregnant and through a year of breast-feeding the twins, she took 3 HIV medicines to keep the virus at a very low level in her body. Every day, she took the medicines — while her babies grew and ate and slept and became these feisty little people. Rose also made sure that her twin babies had preventative HIV medicines for the first months of their lives. She brought them to clinic at AMPATH every month, and we watched them grow and tried to keep them extra-safe with medicines to prevent infections.

Today, I get to tell Rose that it worked. Officially. On their third and final test, the test that we can only do once babies hit 18 months of age, I get to announce that these precious babies are HIV negative.  All of Rose’s work meant that the HIV virus in her blood does not infect her babies.

When I told her, Rose’s eyes crinkled and filled with happy tears. So did mine. Such great news.

We are actually really good at preventing babies from being infected with HIV. With HIV medicines started while a woman is pregnant or even during the time of delivery, we can reduce the chance that the baby will be infected to less than 2%. There is no reason that we cannot give every HIV-infected mother the good news that Rose received today.

Your baby will not carry this virus.

 

In 2012 alone, programs like ours that are funded by the U.S. government’s PEPFAR program averted at least 230,000 babies from being infected with HIV. Worldwide, we have prevented at least 1 million babies from being infected. No baby should be born with this virus. If we can get women tested and linked into care and if we can get them to take these medicines like Rose did, we can make sure that no baby will be born with the virus. It’s a big “if”, but it is possible. An AIDS-free generation.

As the only pediatrician in an HIV clinic, I usually end up seeing lots of really sick kids, the complicated cases. It is my job to serve as a consultant to the clinical officers who see most of the regular patients who are doing well. This makes it a special joy when I get to play with healthy, happy, growing toddlers like Elizabeth and Kyle. And the very best part of the day was telling Rose that these little lovies are HIV-free.

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I long for good news for all of the mothers and grandmothers who wait with their babies in the HIV clinic.

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