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.

Posted at 00:18

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