Monday, 22 February 2016

COTW: 6 years old

By Alyssa (written Sunday, Feb 21)

One of my first patients when I began work in Burundi over two years ago was a little 4 year old girl named Jeanette. She was unable to walk due to severe joint pain and she needed a blood transfusion. We diagnosed her with sickle cell anemia. Near the end of that hospitalization she began to walk again and recovered from that painful crisis.


 I decided at that point that I would like to follow up with her regularly and explained this to her mother. This was asking a lot of her mother as there was no known concept of regular doctor visits unless you were sick, and she had to walk many miles to come with Jeanette’s little brother on her back and sometimes carrying Jeanette as well. But she came. I consulted with some hematology doctors in the US on what we could do for sickle cell patients here and we did our best for her (and for our many other patients with sickle cell) with prophylactic antibiotics, folic acid, and pain medications. But Jeanette frequently was re-hospitalized with malaria, serious infections, severe anemia, and painful crises. You might recognize the below picture from the composite pic in our blog heading above. This was taken when she was 5 years old. 

I didn’t see Jeanette for many months after that hospitalization and I wondered how she was doing. She came back last week. Her mother was very excited to see me and said Jeanette had been asking if she would see me. Their financial situation had worsened so they had been unable to make the trip for her regular visits, but now Jeanette was sick again so they came back. I printed the above picture and Jeanette and her mother were happy to have it. Rachel mentioned that she saw the little girl carrying it around with her around the hospital while on her mother's back. 


But this time Jeanette was very seriously ill with shortness of breath, evidence of sepsis, and malaria. We treated her with our strongest antibiotics, quinine for malaria, oxygen and a blood transfusion. But after a couple days she wasn’t improving and she was no longer able to talk or move the right side of her body. She still greeted me weakly with a left-handed handshake on Friday morning, but it was clear she had had a stroke - one of the many possible complications of sickle cell disease. She died Friday night. Yesterday morning her grief stricken mother asked if there was anything that could be done to help with the hospital bill. She didn’t want to leave without paying but another family member was hospitalized as well and there was no money left to pay Jeanette’s bill. Thankfully we have a Needy Patient Fund for just such a case and we were able to pay her bill from that. The mother was overwhelmed with gratitude and expressed over and over how thankful she was for all we had done for Jeanette. I never know quite how to respond to such conversations - the precious little girl died, after all, what did we really do to help her? 

The translation of Jeanette’s Kirundi name is “I believe God.” And the faith of her mother who chose that name for her was very evident. Even in the midst of her tears of grief, she believed. And in observing her faith, I was reminded of God’s presence as well - even in the valley of the shadow of death. God is indeed the refuge and strength, an ever present help in trouble, for the families of the four young patients we lost at the hospital this weekend and for us as well. This world is broken and it’s not supposed to be this way. But it won’t be this way forever. And God gives more grace. “Jesus loves the little children…” and I’m thankful to know them and love them, too, in His strength. 
I close with one of our team’s favorite quotes which we’ve certainly shared here before but is apropos now:


"What about when the boy is not healed? When, listened to or not listened to, the prayer goes unanswered? Who knows? Just keep praying, Jesus says. Remember the sleepy friend, the crooked judge. Even if the boy dies, keep on beating the path to God's door, because the one thing you can be sure of is that down the path you beat with even your most half-cocked and halting prayer the God you call upon will finally come, and even if he does not bring you the answer you want, he will bring you himself. And maybe at the secret heart of all our prayers that is what we are really praying for.”                                          -Frederick Buechner

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