Kusiima Jenepha

A baby landed at our house at dusk one evening, a newborn wrapped in kitengi cloth, at that point nameless.  She had been born on the path as her mother tried to make it to the hospital in time.  Once there, however, the midwives or parents noted that all was not well.  She was born with imperforate anus, a margin of a few millimeters of cell migration and differentiation in the early weeks of her embryonic existence, a tiny failure to complete the course with huge consequences for survival.  And so she entered life outside the womb with not only a chaotic outdoor delivery, aspirating fluid and gasping for breath, but also the only outlet for her intestines being a small fistula track into her vagina.  

But at least there was an outlet, and with that, hope.  Oxygen and antibiotics for her wet rumbling lungs.  A missionary surgeon in Kampala advised on how to irrigate the meconium out of her small openings.  She tentatively began to feed.  Ultrasound did not find any related anomalies in other organs, though with the coarse lung sounds and no xray we could not rule out an associated tracheo-esophageal fistula.  Meanwhile I was emailing and calling about the country, trying to find a surgeon and hospital with the expertise to handle such a child.  I try to spread my begging for favors around, and regret that I called International Hospital's Hope Ward (charity ward) last.  They agreed to help her.  Her prognosis was poor, certain death if we did nothing, and likely death if we transferred her, and at the very best a life of surgeries and medical challenges that even a family with ten times the resources would be hard pressed to endure.

The parents were committed from the first hour to do whatever it took.  So on the 5th day of her life, I filled out paperwork and gave them transport money to get to the best hospital in Uganda.  I asked then if they had given her a name.  Yes, they said.  "Kusiima Jenepha".  My heart contracted.  Kusiima and Jenepha are both common names.  The first means "thanks".  And the second has been a world-wide favorite, beginning in the 60's when my parents chose it without ever having seen the movie Love Story.  But the combination made me squirm.  I wished I had done more, earlier, faster, more efficiently.  I did not want to be saddled with the credit for this life that was unlikely to last long.

Kusiima Jenepha died the next morning, a few hours after making it to the hospital where she was to have surgery.  The ten hours of transport on the bus were too much, even though we pumped her up with fluids and antibiotics, she arrived in critical condition.  They gave her superb resuscitation care, but she did not recover.  The hospital administrator called to tell me.  I did not expect to see the family again, but the father came back to my house at dusk a week after the first evening.  I knew we had failed him, but he came to thank us for our help.

I do not like to dwell on the patients that die.  We discuss them in our weekly staff meetings, and I tend to explain why we could not have done better, why death was inevitable.  In the last week or so I've lost two children with AIDS and TB, both of whom arrived at late stages and no prior care, malnourished and hypoxic and vomiting and way past the point of return.  And another normal baby whose parents took him to have his baby teeth cut out of his gums to cure diarrhea, a diabolical (literally) practice perpetuated by fear and misinformation that claims too many children.  All of these kids spent at least 48 hours in our care, all seemed to have a chance of recovery, but none did.  I was in the room for only one of these recent deaths, the distressing moment of declaring the struggle over, telling the mother as she wilts wailing to the floor, trying to reach relatives on the phone.

Kusiima Jenepha, however, reminds me that this is not about success or failure.  About striving, sure.  About going the extra mile.  About caring.  About giving every opportunity.  About sacrifice (time, heart, money, worry).  About team work.  About life that is short at 6 days or 6 years or 60.  Perhaps even about love, though that seems too strong and noble a word for my part, it applies to the parents.  Even those who come too late, have come because they love.  I'm thankful for their forgiveness when we fail them.