Previously, when I have seen patients in the clinic in San Marcos, they have mainly come from the city or from areas closer in and have been a step up on the socioeconomic ladder. The parents’ concerns have therefore been related to school performance, crooked teeth, a cough that occurred only around animals or mild speech delays. The distinction, of course is that once they have moved beyond the daily struggle for survival, once they were confident that their children were basically healthy and thriving, parents can afford to turn their attention to refining that health. This time, however, Luis posted signs in the outlying villages that a pediatrician from the US would be at the clinic on Friday, so the patients I saw were mainly from indigenous families living in villages as far as three hours by bus from San Marcos. Although the following stories may read like a bad novel, I assure you they represent an accurate account of my day. As the last patient kissed my cheek and left the clinic, Bette turned to me and said, “Nobody could make this stuff up.”
The first patient of the morning was a 14 year old boy from a town four hours away. His mother carried with her a folder of records from a dozen consultations. He has Retinitis Pigmentosa, an inherited disease that usually begins in adolescence, starting with difficulty seeing at night. There is a steady progression of loss of vision until the patient only has a small tunnel of vision left. Eventually, usually around age forty or so, that vision is lost as well. The boy currently has only a very small degree of tunnel vision and attends a center for the blind where he is learning how to navigate the world. His mother came all the way to see me because she hoped that being a doctor from the US I would either look into her son’s eyes and see something different, another condition that the Guatemalan doctors had missed, a condition instantly curable with a pill, or that I would know of a new miracle treatment available in the US. I examined him and we talked about research and advances and breakthroughs, and I promised to go online and make sure my knowledge was up to date, but in the end, of course, her journey here did not change the course of her son’s progressing blindness.
The second boy was a twelve year old who “still wets his bed even though his eight and six year old siblings don’t.” Said siblings were dancing around the room holding their little crotches, giggling and pointing at their brother and whispering, “mojada,” (wet.) It’s very unusual to see any sort of teasing like this among siblings here as they generally are fiercely loyal to and protective of each other. This behavior told me that this was a major family issue with this boy being a target. It turned out that all the kids sleep together in one small bed and therefore they all wake up soaked with urine each night. The boy, frantic to avoid wetting the bed, gets up six or seven times a night to pee, waking the parents, letting the cold air in and generally disrupting the household, and still wetting the bed. I had a long discussion about bed-wetting and gave the usual suggestions, but it’s harder when the family lives in a small dirt-floored home, sleeping together in one room. In addition the mother has to wash the sheets, and this means heating water over a fire, dumping it in a tub outside the doorway, scrubbing them by hand, and hanging them on the bushes. All the neighbors know. The final blow for this boy is that he has microtia, an underdeveloped right ear. He does have enough of the ear that a good plastic surgeon could reconstruct it for him and get a nice cosmetic result. Fortunately there is a group, similar to Operation Smile that specializes in ears, and I told the mother I would look them up to see if they come to Guatemala.
The next patient was a 14 month old boy who arrived wrapped in a cloth on his mother’s back. She had a three year old girl and five year old boy with her and a large basket with food and other supplies for what had been a two day journey to the clinic. She also carried a large envelope that contained X-rays for me to see. She told me that she had seen some specialists a month ago in a large city closer to where she lived. They had done these tests and told her that her son’s brain was, “dead in the front and back,” and that, ”his hips were very bad and he will never walk.” They sent her home telling her there was nothing to do. She had come to see if there was anything else she could do for her son. The films turned out to be a CT of the head and AP (front to back) and frog-leg (legs flexed at hip and knee,) X-rays of the hips. The written reports were also present. The CT of the head was entirely normal, not only to my pediatrician’s reading (before I read the report,) but also to the radiologist whose conclusion was “normal CT of the brain.” The hips were another matter as they were dislocated but also showed poor mineralization of the bones and a small sacrum. On examination, the boy clearly had weakness and atrophy of his lower extremities and some deformity of his feet consistent with either a low spina bifida occulta or a form of sacral agenesis. In any case, he has neurological problems involving his low spinal cord. Mom said his urine stream is very weak as well, so he likely has kidney damage going on. He will need to see the pediatric neurologist in Guatemala City, and Luis will arrange it. Mom left reassured that her son did not have a dead brain but still not certain of his future walking ability.
Next came a lovely 14 year old girl who walked in supported by her mother. The story was that at two weeks of age the girl had developed pneumonia and had been hospitalized for IV antibiotics. When the IV sites became difficult to find, the doctors changed to giving injections in the leg. The mother pointed to the lower legs, just above the ankles. I asked if she meant that IV’s were placed there, but she was adamant that shots were given there in both legs for several days. After that hospitalization, the girl’s legs were weak, and she never developed properly from the waist down, according to the mother. On further questioning, the mother and girl admitted to some arm and neck weakness but mainly concentrated on the legs. The girl is intelligent, is independent with a walker and attends school. She had an evaluation in Xela three years ago with “a group of specialists” who couldn’t give the mother a diagnosis different from the one related to the injections, but told her the girl would not survive beyond 14 or maybe 18 years of age. The mother came two hours by bus, (without the walker as it would have been an extra charge to put it on the bus,) because the school wants the girl to quit because, “since she’s going to die soon, it doesn’t make sense to take their time teaching her.” She was hoping I could give a diagnosis and a letter for the school. My examination confirmed the girl’s generalized weakness and low tone, but also revealed multiple café-au-lait. On questioning, the Mom revealed that her brother, (the girl’s uncle,) also has these spots. She denied that she had any, but likely does as the girl has Neurofibromatosis, a dominantly inherited disorder. There is a very wide range of symptoms, many people only have the café-au-lait, but some, like this girl, have more serious manifestations. For once I was able to make a direct positive impact for a patient. I gave the mom the diagnosis and discussed with her and the girl that there was no reason to expect anything but a full normal life. We discussed that rather than leaving school, she should concentrate on her education as she is very bright and loves learning. A letter was written and Luis will follow up with the school in his lawyer persona to make sure the girl is supported. The down side for this girl is that there are many complications that can occur with NF, and she will not be monitored for these.
The next patient was a two year old who was scheduled for surgery for his cleft palate the following week. His mother had taken him to the local clinic because he wasn’t speaking as clearly as she thought he should be, and the doctor told her he had a cleft palate. She had seen a neighbor’s child with a cleft palate and couldn’t see anything like that in her child’s mouth. When she questioned him the doctor said it was a “partial cleft.” She came for another opinion. Though I almost lost a finger trying to feel the back of the palate to rule out a submucus cleft, (a cleft of the hard palate hidden by the normal covering of the soft palate,) I finally was able to confirm that the child’s palate was normal. I’m not sure what the doctor had planned for this child, but at least now it won’t happen.
Just to insert a little badly needed levity, there is a wonderful cleaning woman who has been at the Policlínica since its inception in 2011. She takes great pride in keeping the place spotless, especially the white-tiled floors. After every second patient, she would knock softly on the door and come in with her cloth wrapped mop and her spray bottle of strongly scented floor cleaner and thoroughly mop the room. As the day was very tightly booked and the waiting room was mobbed, these short disruptions began to add up. When Bette tried to gently tell her we didn’t need the floor cleaned so frequently, she answered that every patient deserved a “sweet smelling room for their examination.” How could one argue with that?
Next we saw a mother with three of her four children. They were obviously poor and from the campo and none had bathed in a very long time. All three kids had scars from previous burns, two fairly mild and one severe covering part of his scalp and face. Burns are very common in places where cooking, washing and heating are done over open fires, but having three of four children with burns was worrisome. I’ve posted photos on Picasa of the family outside with the bags of school supplies. The older girl was very sweet and quite beautiful. Her hair likely hadn’t been washed in months and she was very underweight. On the other hand, she and her siblings had no cavities in their teeth – too poor to afford sweets.
The saddest case of the morning was an eight year old boy with burns. Six months ago, while his parents were up the mountain gathering firewood, he tried to make himself some coffee from the big kettle of water, boiling over the open fire in the middle of the dirt floor of the hut. The kettle tipped, he fell and boiling water soaked the back of his shorts and ran into the front of the boots. By the time he got everything off, he had third degree burns over the tops of both feet and from the waist down over both buttocks. He was taken to the government hospital where he stayed for 12 days. His mother said the doctor told her that her son needed skin grafts but that the anesthesia was too dangerous so they sent him home with cream. Now, six months later, he has deeply infected unhealed scar tissue covering the burned areas. He can barely walk and sitting is impossible. These scars will never heal as the blood supply was destroyed along with all of the supporting tissue. He needs a prolonged stay in a burn center with extensive grafting. I had to take a break after I saw him so that I could collect myself, greet the next patient civilly and give my attention to his or her story. How any physician could turn a child away for what could only have been financial reasons, knowing the likely outcome would be death or severe disability is beyond my comprehension. I’m not sure where we will find the care this boy urgently needs, but he’s on the top of our list. Meanwhile, I’m left with the picture of this lovely little boy, thanking me with a kiss on my cheek and a soft “gracias a Dios por venir” being helped out of the room by his mother. I know the world is full of suffering children, especially right now with what’s going on in Syria. It’s just hard to be directly in its presence.
So I did save an uplifting and humorous story for the end. Oscar was the last patient of the day, an eight year old with leg pains at night, likely “growing pains.” When I introduced myself as doctora Bartlett, he looked a bit skeptical and turned to Bette and asked if she was a doctor as well. She said no, that she was my helper and that only I was a doctor. He looked me over again, clearly not believing my story. As background I should say that when I work in the clinic, I always wear my white coat because the patients expect the formality of the uniform. I had taken it off because we had thought we were done and then Oscar and his father arrived late. So Oscar, took a big breath and said, severely, “Pero, no tiene uniforme de doctora.” (But, you don’t have a doctor uniforme.) Although I could barely contain myself, likely because I was nearly hysterical from the emotional hits of the day, I calmly said to Oscar, “Oh sí, lo tengo!” (oh yes, I have it!) grabbed my white coat out of my bag where I had stuffed it, put it on with a great flourish, buttoned all the buttons and presented myself to Oscar. He kept a very straight face, looked me over again and then nodded his acceptance. It was delightful and a perfect end to an otherwise trying day.
So just a couple of notes of interest. The two Cuban doctors, Rosita and Judith stopped by the clinic to say goodbye. We had time to visit a bit and learned more about their situation. There are 28 Cuban doctors and nurses living in San Marcos in shared houses. From Monday through Thursday they are bussed to various villages where they stay and work in the clinics and on Friday they are bussed back to San Marcos for the weekend. Both Rosita and Judith are married and Rosita has a 12 year old daughter and Judith has a four year old son. Relatives help to care for them and they only get to see them once a year for the two year commitment. Doing this exchange with Guatemala apparently advances their careers enough that it’s worth it though they both clearly miss their children and husbands.
And finally, when Rachael, the field worker from USAID was in Sibinal and Tacaná with us, she looked carefully at the gardens, the animals and the recently harvested corn. Once back in the car, she told us that the corn was heavily infected with the Aflatoxin that is devastating the corn here this year in particular. Studies have recently linked this toxin to stunting, particularly as it affects the brain growth in malnourished children. The recommendation is that the people not eat the corn, but of course that option is not open to them as it is their main source of food.
So that’s the end of Friday’s adventure. Saturday we drive back to Guatemala City and I meet with Jeff Leher, the director of USAID in the Western Highlands. My fingers are crossed for a productive meeting.
