“We don’t know her name.”
The tiny girl carried in by one of the volunteers from the Pediatric Centre in the hospital could not have a sadder story. Her mother died, and she was found on the floor of their home all alone after however many days it had taken for someone to realize that her mother had passed. Her body tells a story of many months of not-enough-food and sickness and neglect. We don’t know how old she is. And we don’t know her name.
Somehow, out of all those sad details in her story, that one stuck with me. We don’t know her name.
Today’s specialty in my HIV clinic seemed to be very sick children with both TB and HIV and complications that made it almost impossible to find the right combination of medicines for them. The medicines that can cure TB cause problems for our HIV medicines, making them not work right. And the usual medication options to get around these problems are not possible if you have certain complications, as the children I saw today had. A damaged liver. Too malnourished. Too little to take tablets. All of these things and more conspired against our already-limited options.
I was frustrated over my inability to come up with good solutions for these kids and the need to choose between not-so-good and possibly-worse.
And then I really looked at her, girl without a name. Beautiful and precious despite her emaciated body and sores and tube for feeding down her nose. No matter how sick and poor and overwhelmed she was, this girl’s mother surely chose a name for her daughter that was as beautiful and precious as she is. Parents give so much thought to a child’s name. So much of this little girl’s story lost to this virus…
But we begin a new chapter. Hers has been a story of grief and loss. We try to change her story into one that is headed to health and happiness and hope.
I start medicines for her HIV on top of the medicines to treat the TB in her lungs. I refuse to accept the verdict that we are out of the nutritional supplement that will give her much-needed calories, and – sure enough – some plumpynut is miraculously found. The lab tells me that they cannot run the test I need because they are out of vials for blood, so I send her back with a vial from my study supply. We try. We try.
And at the Pediatric Centre on the wards, where the volunteers look after abandoned babies with great care, they have given her a new name.
May her story change.
The jacaranda trees delight me with their bright, purple-blue blossoms against the bright sky.
May I pay attention to all that is beautiful and blooming in this season.
“Building friendships, Brightening futures.”
The theme for our 2013 Kenya Gala highlights two of the best things about our global health partnership in Kenya — in the midst of changing the futures of hundred of thousands of families in Kenya, we also get to make friends who feel like family.
We host this big Gala once every three years as an opportunity to bring together all the many people from around the United States, Canada, and Kenya who work together in the AMPATH partnership or have participated with our programs in Kenya in various ways. Needless to say, this week of hosting colleagues meant a whirlwind of responsibilities, with constant meetings and social functions for many days straight.
The Kenya Gala itself was a delight – a big, warm, welcoming dinner for a family of about 1,000. Perhaps the most special part of the evening was seeing Joe Mamlin, one of the founders of our global health partnership and visionary builder of clinical care systems around the world, receive the President’s Medal for Excellence from Indiana University President Michael A. McRobbie.
Dr. Mamlin immediately called his wife of 55 years, Sarah Ellen Mamlin, up to stand by his side. For all of Wednesday and Thursday, I traveled from Indianapolis to Nairobi with the Mamlins, and I commented to them how special it was that he made sure they were together up there on the stage.
“We are not two people,” Joe said. “We are one.” Such a great tribute to a long marriage and partnership.
A few photos from the Gala…
Whenever a “sponsor letter” comes from the Ilula Children’s Home, I think about what child sponsorship means. It has been my privilege to sponsor children myself, but also to see firsthand how sponsorship benefits children — with the chance to go to school, to be in families, to have the needs of their hearts and bodies and minds met. When I visit orphanages in Kenya, I get to talk with the children behind the neatly-handwritten letters. When I get a letter from a child I sponsor, I think about all the stories that I learn when I enter a children’s home in Kenya and the children take my hands and sit with me and talk.
Not long ago, I spent the afternoon sitting in the grass next to a soccer field where children from the orphanage were playing games. Next to me sat Clara.
Clara is a shy 12-year-old girl, who I diagnosed with HIV a little over a year ago. I had come to the children’s home to have dinner with my Kenyan friends who run the place, and as the evening went on, I got the “Oh, by the way…” request for medical care that is familiar to a doctor in any off-work setting. I never go to a children’s home without my stethoscope, no matter how social the visit was intended. Someone is always sick.
This particular “oh, by the way…” turned into shepherding coughing, sick Clara through our AMPATH clinic. I diagnosed Clara with HIV and ushered her into the world of HIV treatment.
On this sunny Saturday afternoon by the soccer field, Clara gradually shared more and more with me about her health, her medicines, her memories of when she was diagnosed with HIV, and her adventures in class 6. Clara is incredibly proud of how much weight she has gained since starting the HIV medicines. Her grades in school have also improved as dramatically as her CD4 count. She is still very small for her age, but she is no longer the scrawny, sickly looking child I saw a year ago.
Bit by bit, as we sat in the grass, we talked about how hard it is to take the medicines, what it means that there is no cure for HIV (but how the medicines can make the virus “sleep”), and what her future might look like.
I was sad and angry when Clara’s HIV test came back positive (though not surprised), but she remembers that day when I first took her to the HIV clinic as “a gift from God.” Clara had been sick, sick, sick, and during her previous hospitalizations, no one had been able to figure out what was wrong with her. Clara told me that the other children had made fun of her for being so small and sickly. She was worried she was going to die, just like her parents.
And now, with the help of the HIV medicines, she sees herself as “strong and healthy.” And, happily, she is right.
I love to learn the stories of these children of my heart. I did not write this to try to convince anyone reading it to give money. And I know that $100 a month is not a small thing — but it also means CLARA, strong and healthy and laughing and doing well in school and feeling loved.
(And look at what today’s sponsor letter – from a “sister” to Clara – says: “I want to change the world by finding the cure of AIDS that’s why I am trying my best in school”)