My heart’s a little heavy today. Last week, Ishmael (my pseudonym) came back to us from Dadaab Refugee Camp. I haven’t seen him since Friday since I’m not on duty this weekend, and I’m not sure if he’ll still be alive when I call the hospital tomorrow.
We took care of him from November-January when he came to us malnourished, withdrawn, a mystery mass on his back. Initially there was relief at the biopsy result – nothing malignant. But no clues to what it was either. And then, infection after infection of the area, the tissue just dying before our eyes. A 4 year old lying in bed, refusing to eat, no interest in play, soulless eyes without hope. Finally, an answer – an unusual mycobacterium infection, needing strong TB drugs.
Then slowly, a glimmer of hope. Incremental weight gain. Months of fever, disappearing. A boy waking up to the world. His apparently sullen father – trapped in this place where he spoke none of our languages, reliant on other women of his race to translate his most basic requests and thrust into the role of nursemaid – starting to hope that soon, maybe his son would be well. Maybe soon he would be able to return to his wife and children, aliens in a northern Kenyan wasteland.
And home they went – well, almost home. To the refugee camp hospital with a backpack full of medications. But in 3 weeks, before his eyes, his son disappeared again. .
Ishmael came back to us with stool leaking out of his back – inflammation of his bowel creating an abhorrent connection. His urinary system infected. One of his kidneys completely blocked, the other one exhausted and on the brink of failure. His heart losing the ability to pump well. A miserable, exhausted boy at the end of the road.
Before our eyes this week, his kidneys have both shut down altogether. Ishmael’s eyes have disappeared behind a swollen mask as his body fluids have nowhere else to go. Dialysis is available in Nairobi for $500 per session – a temporising measure, for if the kidneys are not working, and we don’t know why, there is no hope of them recovering and transplant is impossible.
So Ruth, the pediatric surgeon, Dorothy, chaplain and translator, and I sat down with Dad on Friday to tell him, this is the end of the road. His impassive father seemed unsurprised – he had been hoping we could have helped, but was also disappointed that he had brought his son so far from home to die, when he could have taken him to a much closer hospital for the same outcome. Even though he is not of our faith, he wanted to join us as we prayed for his son – for the miraculous, or for a peaceful end.
We are hoping he will live long enough for his mother, who we have never met, to make her way down from Dadaab to say goodbye to her son.
I love this little boy. I don’t know why – he hasn’t really ever been my responsibility here, he’s been a surgical patient with us trying to help with some advice. But I just hoped for him. And when we sent him back, I hoped to see him, maybe in a year, happy, smiling. Playful, eating, laughing. And I know now that he won’t. I feel so sad for his father – who through translators I have tried to connect with, tried to cajole him into allowing Ishmael to be fed through a feeding tube. At one time in November I had to sit down with him and via 2 translators (English-Swahili, Swahili-his language) try to explain in a culturally sensitive way why he should stop beating his son to make him eat. I felt like we’d established an uneasy trust, and in having to say to him, your son will die, I felt untrustworthy.
This is just how it goes sometimes, and in my head I know it. But this week, my heart is sad – just a few too many losses. Baby Jonathan whose liver and lungs failed while his parents kept a constant bedside vigil. Another baby who never had a name but whose mother wept and vomited as I informed her of his death which occurred while in the ambulance on the way to us. Tomorrow we will have to say goodbye to baby Malt, whose blood type was different enough from her mother’s that her mother’s antibodies have destroyed her before our eyes. And now Ishmael.
My soul is weary with sorrow;
strengthen me according to your word.
Keep me from deceitful ways;
be gracious to me and teach me your law.
I have chosen the way of faithfulness;
I have set my heart on your laws.
I hold fast to your statutes, Lord;
do not let me be put to shame.
I run in the path of your commands,
for you have broadened my understanding.
What a complex God we serve. Powerful enough to let go of control, to need us to participate with him in the restoration of creation. Strong enough to allow us to choose, and to watch the world unravel and heal, to decay and to blossom. Continue, Lord, to broaden my understanding – even though it sometimes cuts like a knife.
5/3 Baby Malt died this morning. Ishmael still lingers. Pray for the families, and for Jennifer who has had to walk the last steps of the road with them.
9/3 Ishmael lost his battle last night. No more suffering, no more tears.