21 min read
The story of one small Ethiopian boy dying in Addis Ababa and one Jewish physician who wouldn't give up on him.
For several weeks now, I've spent most of my evenings surrounded by dying kids. I work in Addis Ababa, at Black Lion Hospital, a model of modern Ethiopian medicine.
When a new doctor from America came to visit, we drove out to see the hospital.
As we drove by, we saw beggars at the roadside sitting quietly with extended hands. Some had leprosy and were missing fingers, some were mothers with babies at their breasts, some were ex-soldiers who had lost a limb or two.
"Most Ethiopians are poor, and walk great distances," I explained. "My gardener walks an hour from his home to mine to save the 12 cents taxi fare. Peasants walk to bring produce to market, followed by two or three donkeys. Women trek along, carrying huge loads of eucalyptus branches on their backs for firewood. Wealthier people also walk, but they carry umbrellas to protect themselves from the sun."
After a half-mile, we turned right, into the hospital compound. The hospital is an 8-story, 600-bed edifice, which includes the Addis Ababa University Medical and Nursing Schools, and the National Medical Library.
When we walked in, I saw Mesfin, a former student of mine who is now a resident in pediatrics. "Mesfin, how's your night going?" I asked. "OK," he replied, "two admissions, and many sick kids to consult on. We have no empty beds, so we put them in this tiny room off the emergency room." He walked down the hall, which served as the waiting room and opened a door to what could have been a large, unventilated, walk-in closet. It held eight children, each with a parent.
"Here we have two pneumonias, two meningitis, I think this one has TB," Mesfin said, pointing to a 5-year-old boy coughing, "and the other two have diarrhea. I don't know about this one," he commented, pointing to a 6-year-old girl.
There was clearly camaraderie among the parents in the room, who chatted informally with each other, shared food, and shared their miseries. "How long have you been here?” I asked the mother of a boy with meningitis. "Amnist kan, five days," she said without any sign of frustration.
PEDIATRIC EMERGENCY ROOM
We headed to the main pediatric emergency room. "The dedicated interns and residents have nicknamed it Beirut," I explained, "for they consider it a constant disaster; always crowded, always stuffy, and always active."
We stepped into a room about the size of my living room, perhaps 25 by 30 feet. There were 20-30 sick babies and children lying on wooden benches. Ethiopians fear blowing winds, so windows are always closed. Pneumonia and tuberculosis are common here, and the stagnant air makes the hospital a breeding-ground for disease.
I thought that after nearly a decade as a doctor in Africa I had seen "everything," but now I saw a 4-year-old girl whose eyeballs had literally popped out of her head. They were extruding from what appeared to be underlying masses, grossly infected and filled with pus. I asked the duty doctor what was going on. "She is a young Gurageh girl who came in from the countryside with retinoblastoma," he said. I had seen this rare eye tumor as a medical student in India, but never so far advanced. Her father wore a Moslem head cover and sat on a chair, holding her hand and praying quietly. Her mother dozed on the floor.
We briefly looked at the other patients: dehydrated babies with diarrhea and shaved heads, attached to IV lines running into scalp veins, infants with pneumonia and meningitis, and young children with high fevers.
The Ethiopian tolerance for suffering constantly amazes me. Without frustration or complaint, Ethiopians sit with quiet dignity for hours in hot, dirty hospital rooms, only to receive far from optimum care. I turned to my colleague and explained that this was a typical evening in the emergency ward. He shook his head in disbelief.
A HOSPITAL FALLING APART
We stepped out of the pediatric emergency room and walked down a long corridor into the hospital's inpatient section. "Can we take the elevator?" my colleague asked, "We're over 7500 feet altitude and I'm new in the country."
"Impossible," Mesfin replied, "As you can see, there are three elevators, but usually one or two are broken. By elevator it would take us 10 minutes to get upstairs." We slowly climbed to the 7th floor, the heart of the pediatric department.
As we walked, Mesfin described the hospital's situation. "Outpatient clinics are always crowded. You pay 2 birr (about 32 cents US) to open a file, and then you're seen by a doctor. Patients begin showing up at 4 a.m., hoping to be seen the same day. Follow-up cases are charged 5 birr (about 80 cents) per month.”
Mesfin continued, "People often wait for weeks to be admitted into the hospital. A friend who needed orthopedic surgery went to Black Lion every afternoon for 5 weeks until he was admitted. Once he got a bed he waited 10 days for his operation ... There are 3 classes of care here: a first-class, private room costs 30 birr per day (about $4.75); a second-class, two-bedroom costs 11 birr ($1.75); and a bed on a ward with 8-16 other people costs 2.2 birr, or about 35 cents US.
A BOY FIGHTING FOR LIFE
We walked into a ward – all poor people. A nurse immediately spotted me and called me over. "You're a cardiologist,” she said. "You'll be interested in Bewoket. He tells us he walked from Gojjam Province, about 300 kilometers away."
She led us into a room with 9 beds, each occupied by a child.
The nurse pointed to her right. "This is Bewoket." I saw a boy of about 12, wearing a torn hospital gown and cross upon his chest. He was sitting straight up, attached to a tall oxygen cylinder, breathing rapidly.
(There are no facemasks for oxygen delivery, so a piece of used IV tubing is attached to the oxygen valve on one end, and the other end is taped into a nostril. He was in obvious distress, and appeared to be chronically ill.)
"What's the story here, sister?" I asked. "He has rheumatic heart disease," she replied. "I don't know which valves are involved, but he has very bad valves... and a very bad x-ray."
She reached over and took the x-ray from its rusting metal bedside stand. I held it up to the light, and saw that his heart was taking up at least 75% of his chest, while the upper normal limit is about half. This child was clearly in severe heart failure.
When the boy got sick, his family decided he should just stay home and die ...
"How long has he been ill?" I asked. "Five or six years," the nurse replied. "He was hospitalized a couple of times in Gojjam and it helped a lot, but this time he got sick and his family decided he should just stay home and die. He tells us he walked to Addis Ababa instead."
I found it difficult to believe that a boy who could barely sit up in bed could walk 300 kilometers to the capital.
I borrowed a stethoscope and briefly listened to his heart and lungs. "As I see it," I said, "the problem is all in the mitral valve." From my exam, it was obvious that he needed aggressive treatment.
I checked his bedside chart: he was getting a variety of tablets: digoxin (which strengthens contraction of the heart and slows it), quinidine (to correct the abnormal heart rhythm), lasix (diuretic or water pill to get rid of excess fluid), and antacids.
"He is on the wrong drugs at the wrong doses and the wrong method of administration," I told my colleague. "Patients like this have poor absorption. See his edema? It's probably like that inside as well. If you're going to get the excess fluid out, you have to give the lasix into the vein. His doctors are afraid of overdosing him, so they're keeping him on a low-dose of oral lasix. He needs to be peeing like a race-horse, but now he's so overloaded with fluid that he has to sit bolt-upright in bed just to breathe."
"And why is he on quinidine? In a new case of atrial fibrillation, quinidine may convert a person back to normal sinus rhythm. But he's probably been fibrillating for a couple of years; he'll never convert.”
"Doctor," the nurse said, "why don't you send him to America for surgery?"
"It's far too late," I said, "his heart has so much damage at this point that he would be at extremely high risk for surgery. If he did survive surgery, he'd still have a very limited life span. The only thing that would help him at this point is a transplant. And that's impossible, he's not American, and he has no money. We have to be realistic. In the best case, he'll be stabilized, discharged, and live for a couple of years. Worst case -- he'll die very soon."
SAVING ONE SMALL CHILD
I checked back at the hospital daily. I was able to sit with Bewoket and get a more complete history. I learned that he is from a poor family in rural Gojjam. His father is a farmer. He complained that he had little to eat at home, and that he was forced to pay for his own school fees. But he had completed third grade.
His heart condition was the result of rheumatic fever, which itself is due to infection with the bacteria streptococcus, "strep throat."
He had been hospitalized a few times in Gojjam. Each time he improved significantly, but when his family decided he should give up and die, he summoned all his strength and came to Addis Ababa to get treated.
He collected food that had fallen on the sides of the road, and resold it to passers-by. It took him two months to save 16 birr ($2.50). He paid two birr to ride on the top of a truck to get to a bus station. At the bus station, he learned that the bus to Addis Ababa cost 18 birr. However, someone took pity on him and agreed to sell him a ticket for 14 birr. He rode for 2 days, without any food. At night he slept on the dirt floor of a "hotel" room, for which he paid his last half birr (7 cents). He arrived in Addis Ababa penniless and knowing nobody. Luckily, someone at the bus station saw him and brought him to Black Lion Hospital.
For several days in Black Lion, he remained on the same medication. And he failed to improve. The occasional progress notes in his chart duly noted his condition as "critically ill," but failed to come up with a workable plan.
What could I do about this?
A couple of nights later Bewoket looked even worse. His neighbors reported that he was not eating anything all day, and he was breathing more rapidly. He was coughing up blood-streaked sputum, a sign of pulmonary edema, fluid in the lungs.
I was afraid that he would not live through the night, so I tracked down the doctor on duty, and suggested Bewoket be put on IV lasix to help his kidneys excrete the extra fluid in his body.
"What is he on now?" he asked.
"Oral lasix," I answered.
"But there is no IV lasix in the hospital," he replied.
"Give me 15 minutes," I said, "I'll go out and get some." I ran to my car and drove a few blocks to the International Medicine Shop, a high-priced private pharmacy that tends to have a better supply than other pharmacies. "Do you have lasix ampoules?" I asked.
"We have it."
"How much is it?"
"6 birr each (about a dollar).”
"Fine, give me 10."
I drove back to the hospital and delivered the medicine. "I recommend 40 mg IV right now," I told the duty doctor.
"40 mg?" he said doubtfully.
"I'm sure that's what he needs," I said, "minimum. If it doesn't work, I'd go up to 60 mg."
"OK, for now one dose of 40."
I thought how in the American system, a consultant physician is treated with respect and their recommendations usually followed; here I felt like a peasant trespassing on the nobleman's territory.
And here sat 13-year-old Bewoket, hundreds of kilometers from his family, being cared for in a filthy hospital by overworked and under-supervised physicians.
MANIPULATING THE SYSTEM
I felt that Bewoket needed much more aggressive care, and I asked the nurse to encourage his doctors to give him more lasix. The following day he was somewhat better. I typed a politely worded memo to his physicians, giving a bit of advice on how to care for him. It began:
"I realize that Bewoket is extremely ill, but I am interested in trying to help this boy if that is possible. I hope that you do not mind if I give my personal ideas on the treatment of heart failure in him for your consideration. Thanks."
I gave this to a physician who is a close friend and asked him to pass it on to Bewoket's doctors. I did not expect to hear from them.
A few days later, I was home early and got a phone call from a Dr. Arefeineh, asking if he could speak with me about Bewoket. "I'll meet you at his bedside in 20 minutes."
Next to Bewoket's ward was a small, cluttered office. Dr. Arefeineh introduced himself and a group of other residents and medical students. I smiled, sat down and spent a couple of minutes chatting about life in Ethiopia. I wanted to be as informal and pleasant as possible.
I asked to review the chart for a moment, the first time I had actually seen it. He rummaged around and found it underneath 3 others. I took several minutes and went through it, page by page.
I found an echo result, which read: "Dilated left atrium and right atrium with evidence of mitral valve disease." I then checked where the echo result had been copied into the chart. Inexplicably, it reported the opposite: "without evidence of mitral valve disease." His doctors were unaware of the echo's existence, as well as the discrepancy in the chart.
"We need to discuss this," I said, "but first let's take a look at him."
We went next door to his room. Bewoket sat straight up in bed, breathing rapidly. We greeted him and explained that we wanted to examine him. We spoke in English, both because it is the "medical language" of the country and in order not to alarm Bewoket.
We discussed treatment. I pointed out that his oral lasix dose should be higher and given directly into the vein. I encouraged them to try nitroglycerine patches, which I offered to supply.
Due to the near absence of electrocardiogram machines, most Ethiopian doctors cannot read EKGs, and do not appreciate the varieties of abnormal rhythms. But Bewoket actually had an EKG in the chart; I pointed out the findings of rapid atrial fibrillation. "What are the chances that he will revert to sinus rhythm?" I asked.
"Possible," Dr. Arefaineh said.
"Possible, of course," I said, "it's also possible that Mengistu Haile-Mariam will return to Ethiopian tonight. Is it likely?"
"No," he said with a smile.
"I agree." I then explained the drug interactions and said, "I'd stop the quinidine, and hold the digoxin for a few days."
"Another point," I said, "is nutrition." He's weak as a kitten; he is skin and bones. Get him to eat."
I drove home with a bit of hope, knowing that he would get a higher dose of IV lasix and they would stop the quinidine.
THE TURNING POINT
This proved to be was a turning point, and every day after that Bewoket was at least slightly better. His appetite improved. I visited him daily. This was the high point of his day. As I walked in, someone would say in a loud voice, "Bewoket, your father is here." I'd walk over and shake his hand, then place my hand on his shoulder. I'd ask about his health, and then do something to try to make him laugh and lift his spirits.
There are a couple of things that can make these kids laugh. Ethiopians have only one given name; the concept of a family name does not exist here. To their names they add their father's given name, and their grandfather's given name. (In the Ethiopian system, my name would be Richard Elliot Philip). I ask Bewoket his name, to which he answers, "Bewoket."
"Bewoket who?" I ask.
"Bewoket Sintayehu," adding his father's name.
"Sintayehu Abebe," he responds. At some point, often after six or seven generations of names, he will respond, "Alawkum," which means "I do not know” in Amharic.
"Alawkum who?" I ask, as if Alawkum is simply another name.
"How many belly buttons do you have today?"
Another thing I ask kids is: "How many belly buttons do you have today?" When they say, "One," I answer, "Oh, that's right! Ethiopians have only one."
"How about foreigners?" they ask.
I run my hand slowly across my lower abdomen and answer, "Yesterday I had three; today I have four and a half." After several days, most of the children catch on and claim to have several belly buttons themselves.
The hospital provided injera, a pancake-like bread made of a local grain, teff, and a spicy bean sauce, but Bewoket missed eating meat. Every few days I would give him 5 birr (about 80 cents) to buy roast lamb. When I did this, I'd tease him that he must use it to purchase pork or hyena meat, both strictly prohibited by Ethiopian Christians who follow the dietary laws of the Torah. The room would erupt with laughter at the suggestion.
On my way out, I'd always gently "slap him 5," and have him slap me in return. Then I briefly pray for his recovery.
|Dr. Museh (Rick Hodes) listens to Bewoket's heart||Reversal of roles...|
MOTHER TERESA'S MISSION
I had to leave the country for a month, and upon my return, I found that Bewoket had been discharged from the hospital, sent to Mother Teresa's Mission in the north of the city. I went to visit. There were a series of low buildings filled with handicapped, deformed, mentally retarded, ill and dying people. Some had AIDS. They were the poorest of the poor.
Bewoket was in a room with about 30 other people. He had food. The nuns were giving him his medicine. The room was clean, with a cement floor. I listened to his heart. He had reverted back to sinus rhythm. My confident prediction that he was stuck forever in atrial fibrillation was wrong.
But Bewoket was depressed, not eating and very unhappy. He told me he missed me and wanted to live at my house. One afternoon he escaped and ran to me at the hospital. I promptly took him home and put him to sleep on cushions on my living room floor. The following day I returned him to the mission. But we had cut a deal: once a week he could sleep at my home.
A few days later, while I was at Black Lion, I was told that Bewoket had been admitted to the emergency room for diarrhea patients. I found him severely dehydrated, writhing in bloody dysentery. He was given IV fluids and antibiotics. Two days later he was a bit better, back in the mission, but still dehydrated and not eating well. "Drink your ORS (rehydration solution)," I encouraged him, "so that you can get stronger and come to visit me at home."
Last Friday I stopped into the mission. Bewoket had been back for several days, but was in bad shape. A nun from Slovakia said to me, "Doctor, he is in a deep depression. He will not eat anything. We are feeding him with a feeding tube once or twice a day. But he's 12 years old and weights 24 kilos (53 pounds). You made a big mistake to attach yourself to him so much. Now he feels he can't live without you."
I was not convinced I had made a mistake. And I decided to take Bewoket home at once. He was too weak to step up into my car, so I lifted him and placed him in the front seat. He spent the day at my house. As soon as he arrived, he was a different person. He sat up, he ate, he smiled, he walked around a bit and he played with my dogs. I told him that if he would eat well at the mission on Sunday, he could spend Monday at my home.
NOT THE ONLY ONE
There are many kids like Bewoket. What hope do they have? Very little. In this country, where the health budget is about half a dollar per person, and the prospects for controlling "strep throat” the cause of so much heart disease are low, it is likely that things will continue as is, at least for the next decade or two.
Economic development, medical education and expanded primary health care may improve things after a while. But it will be years or decades before real changes occur.
I send a handful of kids abroad for heart surgery at no cost each year, but there are dozens left behind for every one I, or others, send. Nonetheless, I continue my small efforts, for, as the Talmud says, "To save a single human life, is to save an entire world."
"Hodes," a boy named Zerihun said to me today with tears in his eyes, "I'm sixteen. I've been sick like this for six years. Now I can't even get out of bed. I breathe with an oxygen tube. I have no appetite. Can't you do something for me?"
I felt intense frustration and helplessness. Like Bewoket, it is far too late for Zerihun's heart to be cured by surgery.
His suffering is my suffering, too. It is painful for me to look into his eyes. I grieve, not so much because he will die young, but because he's been robbed of the life he had while still alive. He had had few joys to balance his sorrows.
Life for these young cardiac patients is like Woody Allen's description of two cranky women in a restaurant. One says, "The food here is terrible!" "Yes,” the other adds, "and such small portions..."
These children endure a life of pain and suffering, and that life is woefully short.
I held his hand and we sat together quietly. I wiped a tear from his eye and then from my own, and simply said "Aizo," an all-purpose word meaning, "Be brave; do not fear." I was speaking to myself as well as Zerihun.
Is it simply by chance they are impoverished Ethiopians stranded in a filthy hospital and I am a middle-class American with health insurance? I have no answers, but I take some solace from Peter Mathiasson's statement in The Snow Leopard:
"The absurdity of a life that may well end before one understands it, does not relieve one from the duty (to that self which is inseparable from others) to live it as bravely and generously as possible."
Checks made out to JDC can be sent to:
711 3rd Ave, 10th floor,
NY, NY 10017-4014.
att: Rick Hodes
A postscript from Dr. Hodes:
Bewoket had an amazing course. He's really "the million dollar kid."
He made it out of the hospital and was living part-time at Mother Teresa's Mission and part-time with me. We used a combination of medicines to stabilize his heart. He developed active tuberculosis and was treated with 4-drug therapy and did well. He then went to near death from chronic hepatitis B (very common in Ethiopia where about 10% of the population are hep B carriers).
Based on a small study in the New England Journal of Medicine, I treated him with lamivudine, one of the AIDS drugs which was reported to have activity against Hepatitis B. To our great surprise, it cured him. He went from being so weak he couldn't walk up the two small steps to get into my house to being able to walk a half mile. His liver shrunk to normal size and his liver tests normalized. Then I sent him to Atlanta where he had open-heart surgery to repair his mitral valve.
He is back in Ethiopa, living at my home, taking 6 drugs a day including coumadin to thin his blood, but he is doing okay. He is in 3rd grade and walks 3/4 of a mile to school every day. He feels pretty well, but because he's on blood thinners, has to restrict his activities. This is sometimes not so easy for him, but thank God, he is doing quite well.