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Wednesday, March 04, 2009

Stories of Survival

Kagadisa's grandmother began showing up intermittently at the hospital and nutrition programs a few months ago. He had been orphaned and left with her, and as she was scraping by in a polygamous marriage herself, there was little support for her dead daughter's scrawny six- year-old. Back then he weighed 15 kilograms and while unhealthy did not meet critical criteria for admission, so was treated as an outpatient. His grandmother did not follow-up very regularly, and we wondered if his problems were mere neglect. Then after more than a month's hiatus, he appeared again last week weighing an unbelievable 10 kg, a skeleton. Horrifyingly concentration-camp-like. While I see lots of moderate malnutrition, I rarely see a child as severely wasted as Kagadisa. His fragile skin was peeling, his pallor bespoke imminent death. We do not have the best record of reviving children this far gone with our limited care, and I assumed he would die. But no matter how hopeless a child appears, I do not want them to die hungry. We admitted him for slow refeeding, focusing on warmth, comfort, and having something in his stomach. He did not die. Days passed, each morning I checked his bed sure he would be gone. One day I noticed a whole line of healthy dark-skinned normal boys sitting on the edge of his bed. And it hit me that the woman who cared for these children (also her offspring and grandchildren) would not have intentionally allowed Kagadisa to slip away to death. He must have some disease, perhaps the same one that killed his parents. Perhaps TB. We had suspected it several months ago, but none of his lab results supported the diagnosis. I repeated everything and called in our experienced senior nursing officer, who agreed we should try putting him on therapy. He's up to 12 kilograms now, in just a week. But he's still too weak to sit or even hold his head up very long. When Scott snapped this photo and showed it to him, he smiled for the first time, a small hint of a crooked smile. I hope we will be able to show him a much more accurate picture of who he really is by the time he leaves. And I hope to see a real smile, then.

Kosimus' mom weaned him very early and very abruptly, in her effort to protect him from her own HIV infection. New evidence is showing us that early weaning (around six months or earlier) in settings like ours may save a few HIV infections, but this increment in survival is far outweighed by the decrement in survival caused by deaths from malnutrition and diarrhea. When I saw Kosimus' downward sloping growth curve, I was sure he was truly HIV-infected. But so far two tests have come back negative. It seems he was just hungry, that his little five-month-old body could not manage without breast milk. Now he's slurping boxed milk, and his dedicated parents both take their turns, investing in this little chip of a human who will long outlive them. We hope.

Ngonzi was also just hungry. His pregnant mother lied to us, even bringing an official letter from her village chairman declaring him tobe an orphan in her care, hoping that would buy her better care. Within a few minutes we figured out the truth, that she had become pregnant again too quickly and that he could not survive on her dwindled breast milk supply. We assured her that he was being admitted and fed no matter what story she told us .. so she came out with the truth. I suppose you could call this "uncomplicated" malnutrition, a simple lack of food without underlying disease. But I think poverty is inherently complicated.

And lastly, Peter John. A week and a half ago his weeping sister came to our door on a Sunday morning covered in his vomit, and he was lethargic, cool, and near death. He had been discharged from a long hospitalization (in which we diagnosed AIDS) at 10 kg and returned weighing 8, a 20% loss of body weight, severe dehydration. This morning, however, he toddled up to be first in line to be weighed, a 2 year old holding my hand, wearing nothing but an ankle bangle and a string around his waist, smiling. At 10.6 kg, he is back in the land of the living. And I have come to respect his sister Grace, who cares for him with a playful bond and a fierce dedication that outshines most mothers, perhaps also aware of her own impending mortality, investing in her two little siblings. A heavy burden for a 17 year old girl who has already survived abuse, and who cried again today recalling the details of her mother's death. But she smiles when she looks at Peter John, because she sees hope there, too.

These are a few of the stories of survival, stories that are still

being written, stories that may have joyful or tragic endings. And stories which I hope inspire prayer. In the last 24 hours I also saw a chubby baby Gloria, whose mother and twin died the day she was born, and whose survival looked equally hopeless last November. But her grandmother Bena's story touched visitng Barb's heart, and I know Barb recruited prayer, and here she is alive and well. And little Mumbere, still plugging along on treatment for AIDS years after his mother died, a mischievous grin and a frail slip of a grandmother. I noticed his chart: #4, meaning he was the 4th person to be started on anti-retrovirals at Nyahuka Health Center years ago (now we're using chart numbers in the 700's). Many prayed for Mumbere over the years, too. The milk we can measure, the medicines we can count, but the intangible realities of unseen prayers and healing power completes these stories of survival.


Cindy Nore said...

Hi Myrhes family - just wanted to say how much I appreciate such detailed, moving stories of some of the children, parents, and families you are fighting to save there. It seems more and more to me that we in America are so caught up in material things, our own comfort, our nearly frantic efforts to avoid the slightest bit of inconvenience and stress in our daily lives, and it provides such a stark contrast to read about the daily struggles there. Having specific names and stories of those fighting for mere survival there gives me the chance not only to bring those brave souls before the Lord in prayer, but it also enables me to work daily to refocus my time, money, and energy towards eternal things and not my own happiness and ease of life. God bless you as you labor on there, and be assured of my daily prayers for all those you have introduced me to on your blog. With love, Cindy

amypasqualini said...

Hi Docs-
Thanks so much for sharing about these little fighters and their brave siblings, parents and grandparents. It is wonderful to see the success yet so heartbreaking to see the far-reaching need. Thank you for being the hands and heart of Jesus to these people. I will continue to pray for these little ones along with the many that go unmentioned. May God truly bless and protect the work that you are doing! Amy Pasqualini

amypasqualini said...

Hi Docs-
Thank you for sharing the stories of these little fighters and their brave siblings, parents, and grandparents. It is wonderful to see the success while so heartbreaking to see the far reaching need. I pray that hope will aboung where you are and that this next generation can begin to thrive instead of just try to survive. Thank you for being the hands and heart of Jesus to the people you serve. May God truly bless the work you are doing and protect your family and staff along with those that are in dire need of help. I will continue to pray for you and your very valuable ministry to God's beloved people of Uganda!
In Him, Amy Pasqualini

Anonymous said...

Love the details, and stories that DO inspire prayer. keep on keeping on....we are, too!!!