Recently, I decided to look into why it was that so many people here believe what our grandmas still believe about cold air, baths, and bare feet causing illness. I also wanted to find something in Spanish, written not for US patients but for Central American patients, that I could show literate parents to help correct some myths about this subject. I couldn't find a single Spanish language website addressing the issue of illness and cold weather that did not support the following concept that cold air and rapid weather changes cause infectious disease, much less one that tried to dispell the myth. Most of the sites were published by phyisicians, ministries of health, or respected authorities like the WHO (yes, one of the worst was a publication from Bolivia's Regional WHO office). Apologies in advance to those who don't read Spanish (I did translate the first line). I would love anyone's thoughts on why it is that US health authorities have cast away these beliefs but that even well-trained health authorities in Central America haven't. Can we be sure that "we" are right?
Los cambios climáticos son la principal causa de aumento de otitis, faringitis, sinusitis y neumonía en los primeros meses del año aseguró, el doctor Herbert López González, ex presidente de la Asociación Mexicana de Pediatría.
(The climate changes are the principle cause of the rise in otitis, pharyngitis, sinusitis, and pneumonia during the first months of the year, confirmed Dr. Herbert Lopez Gonzalez, ex-president of the Mexican Association of Pediatrics.)
“Nuestros hospitales y nuestros consultorios, han tenido una mayor demanda de atención por enfermedades de esta naturaleza, seguramente porque ha sido un poco más extremoso el clima, explicó.”
Los cambios climáticos que se esperan para los dos meses siguientes, pueden afectar la salud de los pequeños; Las principales medidas de prevención para evitar infecciones respiratorias en los niños son: una adecuada alimentación, pues un niño bien nutrido es menos susceptible de enfermarse; evitarle cambios bruscos de temperatura, mantenerlos abrigados, darles constantemente líquidos, frutas y verduras ricas en vitaminas A y C para reforzar el sistema inmunológico, asegurarse que su esquema de vacunación esté completo y evitar fumar cerca de ellos.
Sunday, April 27, 2008
Heart Failure, Part II
Herlyn got his ECHO at 8:45am by one of the cardiologists and Emilio stood by our side for the study. When that was done, we waited for another cardiologist to see us. Emilio took me on a tour of UNICAR and when we returned an hour later, Herlyn’s dad, German, was in line for Herlyn’s chart. He had been called in to see the cardiologist but when she found out he’d been to UNICAR before, she sent him for the chart and then he had to get back in line to see the cardiologist again; another hour wait. I can say that UNICAR is far more efficient, organized, and clean that probably 99% of medical facilities in Guate but it is, nonetheless, not immune to silly inefficiencies like this. I got the chance to look through the chart and piece together a bit more information on Herlyn’s history. Apparently he had his first cardiology visit at 2 months, where an ECHO revealed a patent ductus arteriosus with a dilated left ventricle. He was placed on furosemide and digoxin and over the next 6 months a host of studies were done, only two of which seemed particularly pertinent: blood type and blood count. In addition, he had several stool studies, urine studies, a test for syphilis, HIV, hepatitis. It’s really unclear to me why he wasn’t repaired within a week of finding the PDA, or at most a month if the boy had been acutely ill with an infection (unfortunately there were no consult notes, just crib notes with orders for more tests and follow-up appts). I can’t help but think what a big, positive impact it would have made in his life to have been treated promptly. Instead, he can’t run, can’t walk up stairs, has a chronic cough, has required antibiotics every few weeks for fevers, and is developmentally quite behind. In fact, it’s entirely possible he could have died in these last few years. His dad was employed and had government insurance (IGSS) but I still wonder how much faster he would have gotten care if his parents had money, education, or light-skin.
I joined German and Herlyn for their consult. I pulled out my notebook to write down important pieces of information but ended up just writing down notes on the inappropriate things the cardiologist said. After having been in Guatemala for a year, I was not surprised that the patients were talked down to and that very little information was shared with them but there’s nothing more impactful (nor anger-inspiring) than to witness it directly.
The cardiologist started by asking why he didn’t show up for his appointment some 3 years ago. Dad explained that he, himself, had required two surgeries (knee and appendix) at the time of that last appointment and then he lost his IGSS and couldn’t afford the visit. I have heard several different versions now of why they didn’t keep going to their appointments so, while I’m sure the above is true, there were likely other factors playing in, not the least of which dad later explained to me: he was tired of always being chastized by the doctors there for his son being sick (he says Herlyn was always sick and they would get mad at German and his wife for not having taken him to a doctor for each of the illness. He was sick for their last appt and German decided not to send him and thereafter all the rumors I summarized in Part I started taking their toll; he just never could get up the will to go through the process all over again - for financial reasons, fear, pride, etc).
So the appointment kicked off with the cardiologist chastizing him for having endangered his son’s life by failing to bring him back. She then said she was going to give him two medicines (furosemide and digoxin) to start taking. The dad asked if the doctors could fix his son; if they could do surgery. She looked up, exasperated. “Do you want me to tell the truth? Because I don’t know if you’re going to listen to me; do you want the truth or not?” He said, looking away, “yes, I would like the truth.” She said, challenging him, “he is really sick and we’ve lost 3 years, haven’t we? Si o no? We’ve lost 3 years, si o no?” German responded, with a look on his face like a 16-year-old being chastized by his parents for staying out too late, “si”. She continued, “so I don’t even know; do you want him to have surgery or not? Do you want him to get better or not?”. German responded that if the medicine she was going to give would be enough, he’d like to just do that (in her chastizing of him, she hadn’t given herself the chance to explain what his condition was, what role the medicine would play, or the neccesity of surgery). I wish she’d taken this opportunity to clarify his condition and the treatment options but it was like she wanted German to feel pain for not having taken full advantage of an opportunity he was once given and fear for his child’s life, so that only at the last minute he could be granted the gift -- by her, no less -- of news that, because they finally listened to her, Herlyn would be able to have his surgery and his life would be saved. She said she couldn’t tell him whether Herlyn could have surgery or what would happen to him. He’d just need to take these two medicines and come back in 2 months and they’d see.
I was enraged. With that level of information, it was all-together likely that German would decide there was no sense in coming back (remember the 4 hr bus ride and a day off work) since 1) it sounds like they are unlikely to be able to help Herlyn 2) they will mistreat me again 3) they are mean people who I can’t trust to treat my child well and do an honest job with the surgery. I was also concerned that he’d see Herlyn doing better with the meds and falsely assume the meds could sustain him forever.
The cardiologist did a very cursory physical exam (less than 3 minutes) during which she pointed out to the dad with indignation that, because of all the delay, his chest had remodeled and looked like a barrel. She wrapped up by writing a prescription for labs (including a repeat of the VDRL -- maybe just one unnecessary test but likely the cost of 3 days of work, or the equivalent of $850 for someone earning $100K a year, like many people in the States) and giving a partially used bottle of digoxin another patient no longer needed. She said, “you can either use this used bottle or buy your own, what do you want to do?” I answered for him, “we’d like the used bottle, thank you” and then turned to him to explain that it would still work just as well.
The consult ended. I followed the cardiologist out of the office and stopped her. “Excuse me for troubling you but would you please explain what it is the boy has wrong with his heart?” She hesitated like she couldn’t believe I had the gall to ask. She responded, “to you?” as if to say, "what would be the use in explaining it to the dad but if it’s to you, well if you insist.” She asked me to follow her back to the office (I signalled to the dad that he should come, too). She explained hastily, punctuated by my questions, that Herlyn had an 11mm PDA with left to right flow, a small VSD, and small non-obstructive lip of subaortic tissue, dilated left chambers with good systolic function, a normal right ventricle, and an unclear pulmonary artery pressure. I told her I would like to be able to pass as much accurate information on to the doctors in San Lucas who would be caring for him after I left so I’d like to know what his chances were for surgery. She said, “well, he definitely has to have surgery and he can’t wait beyond the end of the year. When he comes back in two months, if he’s well, we’ll do a cath for PA pressures and he might be able to stay here for a surgery at that point.” She turned to the dad “make sure he’s well for that visit” (as if it’s a matter of choice for the dad). I clarified that we should come whether he is sick or well and she said, “of course”. So here, she clearly had it in her mind that he would be getting surgery within the next 9 months but somehow didn't think the dad deserved to hear that.
That ended our visit with the cardiologist and Emilio walked us out. He was great and explained to the dad what was wrong with Herlyn’s heart and what role the medicines would play. When we got into the car, I apologized to German for the way he was treated by the cardiologist. He told me that, yes, it was very hard to be treated like that and it was clear to him that she is prideful and does not practice medicine for the joy of it or for the patients but to feel powerful. He said she was the same cardiologist who had seen Herlyn as a baby and always gotten angry with them for him being sick. He also told me how appreciative he was for Emilio who, he said, clearly is a doctor who loves his work and his patients (he had at most 4 minutes with Emilio). Later in the car ride, I overheard German explaining to the driver what was wrong with Herlyn. He described how he had an extra hose connecting two normal hoses and that this hose would need to be closed. But the hose was outside the heart so that meant the surgery wouldn’t be quite as risky. He clearly got this explanation from Emilio in their very brief exchange. It emphasized to me that it doesn’t take time to treat patients well or educate them; it just takes basic human decency and respect.
Despite being a doctor, comfortable in a hospital, and able to understand Herlyn’s condition, I left the cardiologist’s office feeling small, robbed of my ability to advocate for my patient. I felt like anything I did to contradict or question could compromise his care (for the injury it might do to the doctor’s pride). I can only imagine how small the dad felt. I’m glad Herlyn is probably too little to feel these things. I’m also glad that it appears Herlyn has a lesion that will let him recover from him heart failure. I wish the cardiologist had the same good prognosis for her heart.
There are many emotions that circle around this case for me; many questions, mostly ethical. One is that I have to admit that I’m not particularly fond of this dad or, really, of Herlyn’s mom either. I find myself standing in judgment of them and wondering if I’m wrong for feeling the way I do. The dad is aloof and prideful. He doesn’t greet me when I come to visit them (a VERY rare -- really unheard of -- afront in this culture), he cuts me off when I’m talking in order to correct me or contradict me. Even when we got back from our journey to the City, he just got out of the car and thanked the driver and walked off. The parents have many stories as to why their child hasn’t gotten care to date but all are external reasons: the Parrochia has never helped us, the doctors chastize us. At some level, I understand there are reasons for them to not trust the system, the doctors, white people. But I also believe the dad lets his own pride get in the way of his son's care and I believe he could set aside some quetzales for his son but he is adamant that there is no money. Herlyn deserves a cure no matter what his parents are like and his parents surely deserve to be cut a lot of slack. But how much slack do I cut them (and who am I that I have the power to determine their son's outcome)? Herlyn will need to travel to Solola (40 min) for his blood tests in 5 weeks. Do I have them go on their own? Do I pay for the transportation, the tests? He will need to return to UNICAR in 6 weeks. Do I go? Do I set up the ride? What if I decide they need to do it on their own but they don’t do it and then I’m gone and unable to help? Wouldn’t Heryln be the unnecessary victim of that? I know it’s worth it to me to do it all, hands down. But am I causing some harm unwittingly by not insisting that the parents start to take more responsibility?
I joined German and Herlyn for their consult. I pulled out my notebook to write down important pieces of information but ended up just writing down notes on the inappropriate things the cardiologist said. After having been in Guatemala for a year, I was not surprised that the patients were talked down to and that very little information was shared with them but there’s nothing more impactful (nor anger-inspiring) than to witness it directly.
The cardiologist started by asking why he didn’t show up for his appointment some 3 years ago. Dad explained that he, himself, had required two surgeries (knee and appendix) at the time of that last appointment and then he lost his IGSS and couldn’t afford the visit. I have heard several different versions now of why they didn’t keep going to their appointments so, while I’m sure the above is true, there were likely other factors playing in, not the least of which dad later explained to me: he was tired of always being chastized by the doctors there for his son being sick (he says Herlyn was always sick and they would get mad at German and his wife for not having taken him to a doctor for each of the illness. He was sick for their last appt and German decided not to send him and thereafter all the rumors I summarized in Part I started taking their toll; he just never could get up the will to go through the process all over again - for financial reasons, fear, pride, etc).
So the appointment kicked off with the cardiologist chastizing him for having endangered his son’s life by failing to bring him back. She then said she was going to give him two medicines (furosemide and digoxin) to start taking. The dad asked if the doctors could fix his son; if they could do surgery. She looked up, exasperated. “Do you want me to tell the truth? Because I don’t know if you’re going to listen to me; do you want the truth or not?” He said, looking away, “yes, I would like the truth.” She said, challenging him, “he is really sick and we’ve lost 3 years, haven’t we? Si o no? We’ve lost 3 years, si o no?” German responded, with a look on his face like a 16-year-old being chastized by his parents for staying out too late, “si”. She continued, “so I don’t even know; do you want him to have surgery or not? Do you want him to get better or not?”. German responded that if the medicine she was going to give would be enough, he’d like to just do that (in her chastizing of him, she hadn’t given herself the chance to explain what his condition was, what role the medicine would play, or the neccesity of surgery). I wish she’d taken this opportunity to clarify his condition and the treatment options but it was like she wanted German to feel pain for not having taken full advantage of an opportunity he was once given and fear for his child’s life, so that only at the last minute he could be granted the gift -- by her, no less -- of news that, because they finally listened to her, Herlyn would be able to have his surgery and his life would be saved. She said she couldn’t tell him whether Herlyn could have surgery or what would happen to him. He’d just need to take these two medicines and come back in 2 months and they’d see.
I was enraged. With that level of information, it was all-together likely that German would decide there was no sense in coming back (remember the 4 hr bus ride and a day off work) since 1) it sounds like they are unlikely to be able to help Herlyn 2) they will mistreat me again 3) they are mean people who I can’t trust to treat my child well and do an honest job with the surgery. I was also concerned that he’d see Herlyn doing better with the meds and falsely assume the meds could sustain him forever.
The cardiologist did a very cursory physical exam (less than 3 minutes) during which she pointed out to the dad with indignation that, because of all the delay, his chest had remodeled and looked like a barrel. She wrapped up by writing a prescription for labs (including a repeat of the VDRL -- maybe just one unnecessary test but likely the cost of 3 days of work, or the equivalent of $850 for someone earning $100K a year, like many people in the States) and giving a partially used bottle of digoxin another patient no longer needed. She said, “you can either use this used bottle or buy your own, what do you want to do?” I answered for him, “we’d like the used bottle, thank you” and then turned to him to explain that it would still work just as well.
The consult ended. I followed the cardiologist out of the office and stopped her. “Excuse me for troubling you but would you please explain what it is the boy has wrong with his heart?” She hesitated like she couldn’t believe I had the gall to ask. She responded, “to you?” as if to say, "what would be the use in explaining it to the dad but if it’s to you, well if you insist.” She asked me to follow her back to the office (I signalled to the dad that he should come, too). She explained hastily, punctuated by my questions, that Herlyn had an 11mm PDA with left to right flow, a small VSD, and small non-obstructive lip of subaortic tissue, dilated left chambers with good systolic function, a normal right ventricle, and an unclear pulmonary artery pressure. I told her I would like to be able to pass as much accurate information on to the doctors in San Lucas who would be caring for him after I left so I’d like to know what his chances were for surgery. She said, “well, he definitely has to have surgery and he can’t wait beyond the end of the year. When he comes back in two months, if he’s well, we’ll do a cath for PA pressures and he might be able to stay here for a surgery at that point.” She turned to the dad “make sure he’s well for that visit” (as if it’s a matter of choice for the dad). I clarified that we should come whether he is sick or well and she said, “of course”. So here, she clearly had it in her mind that he would be getting surgery within the next 9 months but somehow didn't think the dad deserved to hear that.
That ended our visit with the cardiologist and Emilio walked us out. He was great and explained to the dad what was wrong with Herlyn’s heart and what role the medicines would play. When we got into the car, I apologized to German for the way he was treated by the cardiologist. He told me that, yes, it was very hard to be treated like that and it was clear to him that she is prideful and does not practice medicine for the joy of it or for the patients but to feel powerful. He said she was the same cardiologist who had seen Herlyn as a baby and always gotten angry with them for him being sick. He also told me how appreciative he was for Emilio who, he said, clearly is a doctor who loves his work and his patients (he had at most 4 minutes with Emilio). Later in the car ride, I overheard German explaining to the driver what was wrong with Herlyn. He described how he had an extra hose connecting two normal hoses and that this hose would need to be closed. But the hose was outside the heart so that meant the surgery wouldn’t be quite as risky. He clearly got this explanation from Emilio in their very brief exchange. It emphasized to me that it doesn’t take time to treat patients well or educate them; it just takes basic human decency and respect.
Despite being a doctor, comfortable in a hospital, and able to understand Herlyn’s condition, I left the cardiologist’s office feeling small, robbed of my ability to advocate for my patient. I felt like anything I did to contradict or question could compromise his care (for the injury it might do to the doctor’s pride). I can only imagine how small the dad felt. I’m glad Herlyn is probably too little to feel these things. I’m also glad that it appears Herlyn has a lesion that will let him recover from him heart failure. I wish the cardiologist had the same good prognosis for her heart.
There are many emotions that circle around this case for me; many questions, mostly ethical. One is that I have to admit that I’m not particularly fond of this dad or, really, of Herlyn’s mom either. I find myself standing in judgment of them and wondering if I’m wrong for feeling the way I do. The dad is aloof and prideful. He doesn’t greet me when I come to visit them (a VERY rare -- really unheard of -- afront in this culture), he cuts me off when I’m talking in order to correct me or contradict me. Even when we got back from our journey to the City, he just got out of the car and thanked the driver and walked off. The parents have many stories as to why their child hasn’t gotten care to date but all are external reasons: the Parrochia has never helped us, the doctors chastize us. At some level, I understand there are reasons for them to not trust the system, the doctors, white people. But I also believe the dad lets his own pride get in the way of his son's care and I believe he could set aside some quetzales for his son but he is adamant that there is no money. Herlyn deserves a cure no matter what his parents are like and his parents surely deserve to be cut a lot of slack. But how much slack do I cut them (and who am I that I have the power to determine their son's outcome)? Herlyn will need to travel to Solola (40 min) for his blood tests in 5 weeks. Do I have them go on their own? Do I pay for the transportation, the tests? He will need to return to UNICAR in 6 weeks. Do I go? Do I set up the ride? What if I decide they need to do it on their own but they don’t do it and then I’m gone and unable to help? Wouldn’t Heryln be the unnecessary victim of that? I know it’s worth it to me to do it all, hands down. But am I causing some harm unwittingly by not insisting that the parents start to take more responsibility?
Herlyn and his dad (after 2 weeks on furosemide and digoxin)
Friday, April 25, 2008
Heart Failure, Part I
Herlyn is a 3-and-a-half-year-old boy from Colonia Pampojia, one of the small communities around the Lake. I heard about him for the first time around November of last year when Shom met him on a weight surveilance day and, after hearing a very loud murmur and finding stigmata of heart failure, asked the mother and health promoters if he’d ever received any treatment. Mom remembered that the boy had had several studies done in the past and that a volunteer nurse had be involved but reported that nothing came of it. I asked around about the child to try to get more information: Vicente, Dominga, and Rafael were all unsure what the story was and it was left that I’d need to check with JA, the health promoter who purportedly arranges exams and labs for patients after visiting doctors leave. To put it bluntly, JA is nearly impossible to communicate with. He avoids all volunteers who associate with his sworn enemy, Vicente, to the point that he will turn around in the street and walk the other way or refuse to respond when greeted directly and he consistently is dishonest about what work he has done or is doing. So, because I find my attempts to communicate with JA fruitless, I focused on other issues. Until….
I met the mom and little boy in February at another weight check. Herlyn was one in a long line of malnourished kids, weighing in at just 10kg. On nutrition days, after others have measured the kids, the moms see me for their kids’ acute complaints and feedback on wt gain, or lack their of. Herlyn’s mom told me he’d had painful swellings in his groin area and I took a hernia history before examining him and gave her some information about getting on a list for hernia repair with the visting doctors. Not until after I’d gone through the talk about hernias did she tell me that the reason he hadn’t had his hernias repaired with the recent visiting surgical teams was that someone was concerned about a murmur. I listed to him thinking this would be some innocent murmur I could reassure her about and and then return to the importance of getting those hernias repaired. Instead he had a loud, harsh murmur through a barrel-shaped bounding chest wall and a big liver. Immediately it registered that this was the child I had heard about. I spent a long time with mom, trying to piece together the history. (I had, in the meantime, gathered a bit more information about him: apparently mom had previously said she did have the written summary of the boy's prior testing but she’d just need to look for it and it was also rumored that a NP had been able to get Herlyn set up for surgery but on the day he needed to go and the van came to pick him up, his mom wouldn’t let him go). Mom gave me, one by one, a lot of reasons for why she hadn’t pursued treatment for him including 1) They say that almost all the Mayan kids who get heart surgery in Guatemala City die 2) They say that the doctors are just practicing on Mayan kids and don’t care if they die; maybe they want their organs 3) A local doctor said he’d get better if he took vitamins 4) They say that, while you are initially told the surgery is free, they will actually make you pay 30,000 Q ($4K) 5) He’s always sick so he can’t ever actually travel for treatment. It was so frustrating hearing all these reasons (where were these rumors coming from and did people realize how much damage they were doing by propogating these; how could a doctor really tell the family he would get better or did the doctor never say that but the family is just externalizing the blame for not treating their child or did they misunderstand the doctor; what if the boy dies during surgery -- as he certainly could --, will all these fears just be confirmed?). I tried to be as sensitive, supportive, and non-blaming as possible as I talked with the mom about just having enough faith to let us get him an ECHO (no commitment to surgery; and I’d come and make sure they didn’t get stuck with a bill) and I gave her my cellphone number and volunteered to come any evening to the house to talk with the dad, in case he was the sticking point (commonly the case). I did tell her I thought the boy may only have a few years left to live if she didn’t do something to help him. I didn’t hear from her.
I learned (I think) in my first months here, that one can’t (or shouldn’t) force a parent to do something for their child that they aren’t themselves fighting for. If you do, all bad outcomes were caused by you (and it’s not the blame that’s the problem, it’s that you’ve then cursed them to a life of feeling wronged - severely - by the white man once again and made them all that much less likely to trust future medical care) and you will need to take full responsibility for the care from start to finish or it won’t happen (and that energy you put in could be better directed towards the many families who are begging for your help). So, I decided not to pursue evaluation and definitive treatment for this child.
But, Paul Wise came into town and said he thought I should just (“just”, as you can imagine is never as simple as “just” implies) set up an appointment at UNICAR (a sliding-scale charitable cardiac clinic in Guatemala City - 3.5 hours away), arrange a ride ($85), and let the parents know it was all in place and that I’d be by for them on the given day and hope they showed. I decided he was probably right that I should fight harder for this particular child, though I was not particularly inspired to set all this up and have it not come through as has been my predominant experience here.
I couldn’t find any contact information for UNICAR on the web but, serendipitously, my Guatemalan friend, Emilio, just got a job as a research assistant there and I asked him if he could help us get an appointment (apologizing in advance for a possible no-show). He surprised me by immediately setting one up for just a week later. Yikes, how was I going to convince the family that quickly and get a ride together?! Also, the only option for appointments was 8am. That is tough when you realize you would need to leave by 3am or 4am by chicken bus and everyone (backed by the daily news reports) warns that you should never be on a chicken bus when it’s dark out given the very frequent night assaults on the buses.
With the help of Rosa, the health promoter in Pampojila, I set up an appointment to talk with the family one evening about pursuing an ECHO. The reunion was a bit tense. Dad wouldn’t look at me when I walked in and, once we started talking, often cut me off brusquely to correct me or add something. That’s why it caught me totally off-guard when after he gave us a long summary of the history (months of tedious, seemingly unnecessarily repetitive testing for his boy over the first 8 months of his life, loss of a job and government insurance, mixed messages from doctors about his condition and the safety of heart surgery), he thanked me for caring and for offering them this second chance to seek definitive care for Herlyn. He said he’d grown increasingly attached to his son, he guessed machines and outcomes were better now, he’d watched two children in the community thrive after heart surgeries, and he felt my persistence and a recent visit by a child sponsorship organization might be messages that this was time to act.
I told him I had to be completely honest with him that the boy might not be able to have surgery even after all this effort. And he said he needed to be completely honest with me that he had no money to put into this ("plata no hay"). Mom expressed concern about what would happen when I left in June. I told them I wasn’t sure and couldn’t make promises because I didn’t even know what his heart condition, recommended treatment, and prognosis were but that I would do what I could to help their support continue through local doctors, health promoters, and Paul Wise. Mom mentioned the boy currently had a fever and dysentery. And mom was due to deliver her next baby in just a week. She couldn’t travel. And dad was working. Dad surprised me once again by saying he would travel with the boy and me (for a dad to take a child to a medical visit -- or anything else for that matter -- alone is something I haven’t seen but once or twice this year) and cancel work for Friday if I could assure him we’d be going. I left treatment for the boy and promised to figure out the ride situation and come back to see them on Thursday with details (this was Tues, appt was Fri; they don’t have a phone).
I left very excited. I couldn’t believe dad gave me the go-ahead. Rosa suggested I ask the Parrochia for an ambulance transport. It sounded like a great idea at first but that would tie it up all day and could actually cause someone harm so I re-thought. I didn’t want to ask the Parrochia for a car because they are resistent to direct gringo intervention with local families in need. I thought they might be unhappy that I was taking the reins on this. I decided to try the hospital director (Parrochia, yes, but one-step removed). He didn’t miss a beat. He made a quick call and the ride was set for Friday at 3am. Unreal!
On Thursday, I went back to Pampojila to confirm with the dad about the trip, hoping that my visiting them that night before would make it just that much more likely that they would show in the morning. Herlyn was sick with a fever (again) and had slept all day. They were worried about traveling with him. I thought I was going to lose them. I said, "we need to travel tomorrow even if he has a fever. I will bring my exam kit and medications and I will treat him on the road if he needs it when I see him in the morning". They nodded.
I was all nerves last night thinking about today and wondering if they would show and, if so, how it would go at UNICAR. I made us sandwiches for breakfast and lunch, got some meds together to treat whatever I might find on his exam, and set out my things for a quick departure in the morning.
When we took off at 3am, it was pitch black. We pulled up to the Colonia and waited. I had told them 3:30am so we had some time to sit and stare and worry. At 3:30, I started anxiously looking at my watch--it was dead still in the town. At 3:35, dogs started barking. Could it be that they were coming? A shadow of the dad and his sleeping cargo appeared. I was elated (not exaggerating).
I offered to hold the boy in the back seat so he could sleep (I selfishly just wanted to get to cuddle him and I got to do that all the way to Guate. He was scared of me at first but then held my hand and snuggled up against the cold). We got to UNICAR at 6:30am and took our seat.
(Now, I have to go to bed ... To Be Continued)
I met the mom and little boy in February at another weight check. Herlyn was one in a long line of malnourished kids, weighing in at just 10kg. On nutrition days, after others have measured the kids, the moms see me for their kids’ acute complaints and feedback on wt gain, or lack their of. Herlyn’s mom told me he’d had painful swellings in his groin area and I took a hernia history before examining him and gave her some information about getting on a list for hernia repair with the visting doctors. Not until after I’d gone through the talk about hernias did she tell me that the reason he hadn’t had his hernias repaired with the recent visiting surgical teams was that someone was concerned about a murmur. I listed to him thinking this would be some innocent murmur I could reassure her about and and then return to the importance of getting those hernias repaired. Instead he had a loud, harsh murmur through a barrel-shaped bounding chest wall and a big liver. Immediately it registered that this was the child I had heard about. I spent a long time with mom, trying to piece together the history. (I had, in the meantime, gathered a bit more information about him: apparently mom had previously said she did have the written summary of the boy's prior testing but she’d just need to look for it and it was also rumored that a NP had been able to get Herlyn set up for surgery but on the day he needed to go and the van came to pick him up, his mom wouldn’t let him go). Mom gave me, one by one, a lot of reasons for why she hadn’t pursued treatment for him including 1) They say that almost all the Mayan kids who get heart surgery in Guatemala City die 2) They say that the doctors are just practicing on Mayan kids and don’t care if they die; maybe they want their organs 3) A local doctor said he’d get better if he took vitamins 4) They say that, while you are initially told the surgery is free, they will actually make you pay 30,000 Q ($4K) 5) He’s always sick so he can’t ever actually travel for treatment. It was so frustrating hearing all these reasons (where were these rumors coming from and did people realize how much damage they were doing by propogating these; how could a doctor really tell the family he would get better or did the doctor never say that but the family is just externalizing the blame for not treating their child or did they misunderstand the doctor; what if the boy dies during surgery -- as he certainly could --, will all these fears just be confirmed?). I tried to be as sensitive, supportive, and non-blaming as possible as I talked with the mom about just having enough faith to let us get him an ECHO (no commitment to surgery; and I’d come and make sure they didn’t get stuck with a bill) and I gave her my cellphone number and volunteered to come any evening to the house to talk with the dad, in case he was the sticking point (commonly the case). I did tell her I thought the boy may only have a few years left to live if she didn’t do something to help him. I didn’t hear from her.
I learned (I think) in my first months here, that one can’t (or shouldn’t) force a parent to do something for their child that they aren’t themselves fighting for. If you do, all bad outcomes were caused by you (and it’s not the blame that’s the problem, it’s that you’ve then cursed them to a life of feeling wronged - severely - by the white man once again and made them all that much less likely to trust future medical care) and you will need to take full responsibility for the care from start to finish or it won’t happen (and that energy you put in could be better directed towards the many families who are begging for your help). So, I decided not to pursue evaluation and definitive treatment for this child.
But, Paul Wise came into town and said he thought I should just (“just”, as you can imagine is never as simple as “just” implies) set up an appointment at UNICAR (a sliding-scale charitable cardiac clinic in Guatemala City - 3.5 hours away), arrange a ride ($85), and let the parents know it was all in place and that I’d be by for them on the given day and hope they showed. I decided he was probably right that I should fight harder for this particular child, though I was not particularly inspired to set all this up and have it not come through as has been my predominant experience here.
I couldn’t find any contact information for UNICAR on the web but, serendipitously, my Guatemalan friend, Emilio, just got a job as a research assistant there and I asked him if he could help us get an appointment (apologizing in advance for a possible no-show). He surprised me by immediately setting one up for just a week later. Yikes, how was I going to convince the family that quickly and get a ride together?! Also, the only option for appointments was 8am. That is tough when you realize you would need to leave by 3am or 4am by chicken bus and everyone (backed by the daily news reports) warns that you should never be on a chicken bus when it’s dark out given the very frequent night assaults on the buses.
With the help of Rosa, the health promoter in Pampojila, I set up an appointment to talk with the family one evening about pursuing an ECHO. The reunion was a bit tense. Dad wouldn’t look at me when I walked in and, once we started talking, often cut me off brusquely to correct me or add something. That’s why it caught me totally off-guard when after he gave us a long summary of the history (months of tedious, seemingly unnecessarily repetitive testing for his boy over the first 8 months of his life, loss of a job and government insurance, mixed messages from doctors about his condition and the safety of heart surgery), he thanked me for caring and for offering them this second chance to seek definitive care for Herlyn. He said he’d grown increasingly attached to his son, he guessed machines and outcomes were better now, he’d watched two children in the community thrive after heart surgeries, and he felt my persistence and a recent visit by a child sponsorship organization might be messages that this was time to act.
I told him I had to be completely honest with him that the boy might not be able to have surgery even after all this effort. And he said he needed to be completely honest with me that he had no money to put into this ("plata no hay"). Mom expressed concern about what would happen when I left in June. I told them I wasn’t sure and couldn’t make promises because I didn’t even know what his heart condition, recommended treatment, and prognosis were but that I would do what I could to help their support continue through local doctors, health promoters, and Paul Wise. Mom mentioned the boy currently had a fever and dysentery. And mom was due to deliver her next baby in just a week. She couldn’t travel. And dad was working. Dad surprised me once again by saying he would travel with the boy and me (for a dad to take a child to a medical visit -- or anything else for that matter -- alone is something I haven’t seen but once or twice this year) and cancel work for Friday if I could assure him we’d be going. I left treatment for the boy and promised to figure out the ride situation and come back to see them on Thursday with details (this was Tues, appt was Fri; they don’t have a phone).
I left very excited. I couldn’t believe dad gave me the go-ahead. Rosa suggested I ask the Parrochia for an ambulance transport. It sounded like a great idea at first but that would tie it up all day and could actually cause someone harm so I re-thought. I didn’t want to ask the Parrochia for a car because they are resistent to direct gringo intervention with local families in need. I thought they might be unhappy that I was taking the reins on this. I decided to try the hospital director (Parrochia, yes, but one-step removed). He didn’t miss a beat. He made a quick call and the ride was set for Friday at 3am. Unreal!
On Thursday, I went back to Pampojila to confirm with the dad about the trip, hoping that my visiting them that night before would make it just that much more likely that they would show in the morning. Herlyn was sick with a fever (again) and had slept all day. They were worried about traveling with him. I thought I was going to lose them. I said, "we need to travel tomorrow even if he has a fever. I will bring my exam kit and medications and I will treat him on the road if he needs it when I see him in the morning". They nodded.
I was all nerves last night thinking about today and wondering if they would show and, if so, how it would go at UNICAR. I made us sandwiches for breakfast and lunch, got some meds together to treat whatever I might find on his exam, and set out my things for a quick departure in the morning.
When we took off at 3am, it was pitch black. We pulled up to the Colonia and waited. I had told them 3:30am so we had some time to sit and stare and worry. At 3:30, I started anxiously looking at my watch--it was dead still in the town. At 3:35, dogs started barking. Could it be that they were coming? A shadow of the dad and his sleeping cargo appeared. I was elated (not exaggerating).
I offered to hold the boy in the back seat so he could sleep (I selfishly just wanted to get to cuddle him and I got to do that all the way to Guate. He was scared of me at first but then held my hand and snuggled up against the cold). We got to UNICAR at 6:30am and took our seat.
(Now, I have to go to bed ... To Be Continued)
Sunday, April 13, 2008
Photos, Assorted
Jenny competing for the school designation "nina simpatica"
Mom and me in Panajachel
With Shom and Elena in Panajachel
Dominga teaching about teach care in one of the rural schools
Visiting Florinda, a patient's mom, as she weaves on a traditional back loom
Sixth grade classroom in Por Venir
Tamascal: traditional Mayan sauna
Checking Florinda's son for a rash
Dinner with Dad at Angel's
Seeing a 4-year-old (doesn't look it!) near-drowning victim in the ER
Medicinal plants class with the Health Promoters
Angel's cousin Maria Elena and her adorable son, Rudy
Maria Elena, Sandra, Flor, and me in the kitchen
Shom and Elena's neighbors
First birthday!
Traditional San Lucas dress
Little boy carrying his share of wood behind his mom and sisters
Advertisement for 2 day traveling medical clinic offering "American Medicines" and consults on "Leukemia"
Coffee drying Doctor’s Advice
There’s a phenomenon I have noticed since I got here that drives me a little crazy at times. It’s that of lay medical advice … not to friends and family from friends and family but to doctors from friends and family. Yes, people tell me all the time what illness I or another person has and educate me about the illness as if I had no experience whatsoever with health, illness, or medicine.
Here is the most recent example of this: a neighbor brought in her little girl today with an itchy skin rash. It was characteristic of fleas, as was the history. We talked about fumigating and treating the itching and I told the mom I’d come by the house later with some medicine since the dad was out of work and there wasn’t any money. As he typically does, Angel came with me to find the house. As we were chatting, the mom told Angel about the itching and the bites. He offered up that it was probably a heat rash but then quickly changed his mind and said that it was probably scabies. He and his unit, back when he was in the army, had suffered an itchy rash and it was scabies. He said rather definitively, “you know what that is? I bet it’s scabies.” He didn’t say, “that sounds like scabies; what do you think, Kate, could it be scabies?" or “Are you sure it's fleas; why don’t you think it’s scabies?” We weren’t looking for a new diagnosis. I'd already told him the child has fleas and we were just dropping off a medicine. It seemed so strange to me (though no longer unfamiliar) that he was offering up suggestions as if I weren't there. As if we were a group of friends hanging out, speculating on a medical condition, regretting that there was no doctor amongst us. I cut in and said casually, “no, it’s not scabies because that bite has a different look to it” and he said, “or maybe it’s ---- (some insect I either haven’t heard of or don’t know the Spanish name for), those itch a lot; more than fleas.” I was even more frustrated. I wanted to say, “Angel, I studied this stuff. Why guess at what it could be when I already let you both know what it was?”. When I confirmed with her about the product she needed to use to kill the fleas he said, “and that will work to kill whatever it is anyway.” Augghhh!
So then we got home and I laid down since I wasn’t feeling very good. I’d started feeling sick yesterday with diarrhea (as usual) and felt feverish yesterday, this morning, and again in the evening tonight. I’d already started my amoeba medicine but was waiting for my Tylenol to kick in. Angel came and got me for dinner but I just wasn’t hungry. I sat with the family but told them I wasn’t feeling well - feverish and chilled. Angel said, “that’s because you worked so hard in the garden yesterday. You aren’t used to it like we are.” I said, “well, I actually I think I’ve got the amoebas again since I have diarrhea and feel achy and feverish”. He said, “ that’s just from working outside yesterday”. Usually, I drop it there but in my irritable, uncomfortable state, I responded that I thought maybe some of the muscle soreness was from working in the garden but the fever probably wasn’t; more likely it was infection. He said, “and tiring yourself in the garden.” It was as comical an exchange as it was frustrating. It’s not the disagreement that got me, and gets me each time this happens --- and it happens a lot --- it was that it seemed to mean absolutely nothing to him that I practice medicine for a living and that illness is my area of “expertise”.
I honestly can’t figure where this comes from. A few times when I’ve told Angel my muscles are sore after a run, he’s told me that is because there is air stuck in the muscle and that someone needs to suck it out. Or Sandra explained to me one day that colic was caused by small spines in a babies skin that need to be rubbed out vigorously and fall onto the table in a pile. I don’t mind the advice or sharing of different healing traditions but I would just expect that they would couch it more like, “well, I’m not sure what doctors believe about muscle pain but we think it comes from air that gets trapped in the muscle” or “from what I’ve seen, colic can be cured if you just get these little spines out of the babies skin”. But it’s never like that, it’s just a definitive statement. Why?
Here is the most recent example of this: a neighbor brought in her little girl today with an itchy skin rash. It was characteristic of fleas, as was the history. We talked about fumigating and treating the itching and I told the mom I’d come by the house later with some medicine since the dad was out of work and there wasn’t any money. As he typically does, Angel came with me to find the house. As we were chatting, the mom told Angel about the itching and the bites. He offered up that it was probably a heat rash but then quickly changed his mind and said that it was probably scabies. He and his unit, back when he was in the army, had suffered an itchy rash and it was scabies. He said rather definitively, “you know what that is? I bet it’s scabies.” He didn’t say, “that sounds like scabies; what do you think, Kate, could it be scabies?" or “Are you sure it's fleas; why don’t you think it’s scabies?” We weren’t looking for a new diagnosis. I'd already told him the child has fleas and we were just dropping off a medicine. It seemed so strange to me (though no longer unfamiliar) that he was offering up suggestions as if I weren't there. As if we were a group of friends hanging out, speculating on a medical condition, regretting that there was no doctor amongst us. I cut in and said casually, “no, it’s not scabies because that bite has a different look to it” and he said, “or maybe it’s ---- (some insect I either haven’t heard of or don’t know the Spanish name for), those itch a lot; more than fleas.” I was even more frustrated. I wanted to say, “Angel, I studied this stuff. Why guess at what it could be when I already let you both know what it was?”. When I confirmed with her about the product she needed to use to kill the fleas he said, “and that will work to kill whatever it is anyway.” Augghhh!
So then we got home and I laid down since I wasn’t feeling very good. I’d started feeling sick yesterday with diarrhea (as usual) and felt feverish yesterday, this morning, and again in the evening tonight. I’d already started my amoeba medicine but was waiting for my Tylenol to kick in. Angel came and got me for dinner but I just wasn’t hungry. I sat with the family but told them I wasn’t feeling well - feverish and chilled. Angel said, “that’s because you worked so hard in the garden yesterday. You aren’t used to it like we are.” I said, “well, I actually I think I’ve got the amoebas again since I have diarrhea and feel achy and feverish”. He said, “ that’s just from working outside yesterday”. Usually, I drop it there but in my irritable, uncomfortable state, I responded that I thought maybe some of the muscle soreness was from working in the garden but the fever probably wasn’t; more likely it was infection. He said, “and tiring yourself in the garden.” It was as comical an exchange as it was frustrating. It’s not the disagreement that got me, and gets me each time this happens --- and it happens a lot --- it was that it seemed to mean absolutely nothing to him that I practice medicine for a living and that illness is my area of “expertise”.
I honestly can’t figure where this comes from. A few times when I’ve told Angel my muscles are sore after a run, he’s told me that is because there is air stuck in the muscle and that someone needs to suck it out. Or Sandra explained to me one day that colic was caused by small spines in a babies skin that need to be rubbed out vigorously and fall onto the table in a pile. I don’t mind the advice or sharing of different healing traditions but I would just expect that they would couch it more like, “well, I’m not sure what doctors believe about muscle pain but we think it comes from air that gets trapped in the muscle” or “from what I’ve seen, colic can be cured if you just get these little spines out of the babies skin”. But it’s never like that, it’s just a definitive statement. Why?
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