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Sunday, January 21, 2018

How we failed A.: a story of chronic illness in a resource-constrained place

We walked into the hospital last week for our first day back:  staffing changes, absent interns, the usual crowds and needs.  Scott was orienting new visiting residents and evaluating women for surgery and I was catching up on complicated patients and deciding on treatment plans, both of us distracted by also trying to pay attention to our visiting mom and to various team issues.  About half way through the morning I walked into one of our isolation rooms and nearly stopped breathing.  The 11 year old boy I saw sitting there truly looked like a skeleton.  His skin stretched taunt enough to see the shape of each bone. He greeted me in English and even smiled a little, and his mom said he'd had some mouth sores the last two weeks and lost a bit of weight because he wasn't eating, but now he was doing better.  No one could look like that in two weeks.  So over the next few days I learned his story. 

His story on this earth is now over, but I offer a few details in the hope that we can change the next story. 

A. was born with HIV infection, but he and his mom did not know that until 2010 when he was 4 years old.  About half of children who are born HIV-infected in Africa will progress to AIDS and die by the time they are 1 year old.  He was in the other half who struggled along.  So our first failure to A. and his family was that his mom was not diagnosed before or during pregnancy, so she took no drugs to prevent transmission of the virus to A.  Our second was that he was never screened after birth.  So by the time he was 4, this HIV infection had advanced enough that he weighed less than 20 pounds (9kg).  At that point he and his mom got the sad hard news of their trouble, and entered clinical care.

From 2010 to 2017 he went to clinic at least every three months.  I looked through pages of his notes.   He was prescribed anti-retroviral drugs, and Septrin to prevent infections.  He first had a blood test to quanitfy his viral load, the amount of HIV virus circulating, in 2013.  Why not earlier? Another failure of our world, that places like Naivasha with high burdens of HIV still lag behind places like America in availability of testing.  The tests are sent away, there is a lag time of weeks to months to get results, they are done infrequently. The test came back with terribly high levels of virus, meaning that his drugs were not working.  Kenya protocol requires that a child with a poor response to drugs be counseled for compliance and retested in 3 months and then changed to a stronger combination.  Instead he was tested once a year from 2013 to 2017, every time with sky-high unacceptable results.  But no changes made.  He was growing from 20 to 40 pounds (10 to 22 kg), getting taller, going to school.  So our system failed to realize this child had unchecked untreated HIV in spite of taking his medicine faithfully, and did not respond.

In 2017, his records show his weight dropping every visit.  From 22, 21, 19, 17, 16, 15, to 14 kg (40 down to 30 pounds).  Finally in November someone realized that his dropping weight and his high-viral-load results meant he should change medicines, and switched him to a regimen that should have been the first choice years and years ago.  But he kept dwindling.  By the time he was seen in January he weighed 12 kg, and then when he was sent to be hospitalized, 11.  That's 24 pounds as an 11 year old, the same as his weight when he was five, having lost HALF HIS WEIGHT in a year.  In spite of this someone checked a box on his record each visit over the last year saying "weight loss?" "NO".  Another failure.

After a lifetime of untreated HIV infection, after dwindling to a skeleton, after probably having HIV-associated malignancies and opportunistic infections running rampant, I saw him the last few days of his life.  We had treated his sores and we gingerly tried to re-feed him, offering limited calories through a nutritional milk that he loved.  His temperature remained cold, his labs were off the charts abnormal.  He needed an ICU and a miracle and we had neither.  Friday night my intern texted me to say that A. had died.

I believe A. is now healed.  That he has a seat of honor at the wedding feast of the Lamb.  That he's no longer hungry or weak or cold or in pain.  That the "all things new" promise of Revelations extends to him, right now.  I only wish it could have started 11 years ago.  Or before that.  That's why we are here, why we do what we do.  Bringing that all things new into this place.  Please listen to this Hillsong video of the song we played for church this morning, in honor of A.

1 comment:

aunty.em said...

This is just heart breaking. How much suffering he must have endured! Sure does put things in perspective for me. Thank you for sharing.