I am in the midst of 3 days at a great conference on “Epidemic Ethics” that the IU Center for Bioethics is hosting as part of their efforts to train experts in international research ethics. I have participated as a speaker at this conference several times, and they always bring together an fascinating group from across multiple disciplines to consider.
Today, a PhD/nurse/bioethicist from the University of Cincinnati described clinical ethics and his experiences in an Ebola unit in Sierre Leone with Partners in Health last year. He closed with the story of a little girl who he had cared for, loved, and lost. He had written a poem for her, and the cracks in my own heart reverberated as he spoke of the loss of this child whom he loved.
His story made me think of Geoffrey, and I wanted to tell his story again. My last promise to him was that I would remember him and that I would tell his story, and so I will. The loss of G is one of those cracks in my heart that I don’t want to forget.
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 only weighed 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. The 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.
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.
I don’t know why I loved G so much. Certain children just stick in your heart. I started taking care of him in January at 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 him with his significant needs for medicines and food and medical care.
I ended up hospitalizing G in March, and he stayed on the wards for 3 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, G was as sick as ever, and he began to ask to go home. Not to the shelter, but 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 in the hospital 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.
There are virtually no services for Kenyan children at the end of their lives. A recent report from Human Rights Watch details how Kenyan children in pain suffer because government policies restrict access to inexpensive pain medicines and because there are not the kind of palliative care services and healthcare workers really needed to care for chronically ill children in pain. G could at least 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.
I did not hear about his death until a member of his family returned to Eldoret a few weeks later. G died a few days after he went home. He had walked for me before he left the hospital, which he had not done in weeks. We took that picture up above on that day. G was proud to be standing up, and I loved seeing him smile.
We said our goodbyes, and he was so, so happy to be going to his grandmother’s home. He had left saying that he would be going to a better place. I think he knew what that better place really was – in his heart, on multiple levels. That is my hope for him.
Goodbye G. I promise to do what I can to make our care system better at helping children like you, children at the end of their struggle with this virus. I promise to remember you and to tell your story, just as I said that I would.