Family Planning

I was talking today with the grandmother of Estefany, my goddaughter. She is 40-years-old and just found out she is 4 months pregnant with her 11th child. She wants me to come with her to her ultrasound visit with Rafael because she’s embarassed. Initially I thought the embarrassment was a male-female thing but she explained that she was embarrassed that she had so many children and he would judge her for it.

She explained to me that she’d wished to have stopped having children after her 8th child. At that time, she began using depo provera injections and continued for 5 years. Depo provera is the “non-natural” family planning method of choice around here. Methods from condoms to pills to depo to IUDs are offered free via the Centro de Salud and surgery for males or females is offered at minimal charge (materials only) at the National Hospital in Solola. A pap smear is required prior to obtaining the methods. I never heard of condoms being used here (but once did get hearty laughter at the suggestion) nor seen one or its wrapper amongst the trash that lines all the streets and paths. They just aren’t used. I also haven’t heard of anyone using an IUD (though I know Rafael discourages the option as he had the experience of delivering a baby who had an IUD imbedded in its cheek -- not the most confidence-inspiring experience). Pills have been prescribed to some for irregular periods but not that I know of for “planificacion”. Some feel that pills sterilize women. Male surgery is absolutely not accepted but female sugery is, if a c-section happens to be needed. Even then, rumors are rampant of people getting pregnant after having had the surgery. Are the stories true (are the surgeons not very reliable)? Or do people spread these stories to scape goat after yet another unwanted pregnancy or, given the distrust of western medicine, is one failed tubal ligation enough to discredit the whole concept? Despite depo being the “method of choice” it is still very poorly accepted. I have heard numerous complaints of severe headaches, abdominal pains, and stomach “swelling” with depo use. Dr. Tun seems to have a low threshold as well for labeling it as “not tolerated” in a given patient. When my neighbor went off of depo and bled for 6 days straight, Rafael labeled it off limits for her in the future. I had told her it was not uncommon to have a heavy first period after stopping the depo but she was sure she would die, she told me.

In talking to Estefany’s grandmother, I realized this was a common fear. She said the medicine hadn’t sat well with her because her period didn’t come; she was blocked off and all the “suciedad” (dirtiness, as the menstrual blood is often called) stayed inside. Her abdomen got bigger and bigger over the last year and she could barely walk. She was fortunate enough, as she says, to have heard a natural medicine man in the plaza talking about how family planning methods will kill you; particularly depo because you will bleed to death when you finally go off of it. He explained to her that all the periods build up inside and they will have to come out; he’d seen it before and many women had died of the bleeding. He told her to stop the injections immediately, sold her several herbs and said that in 15 days, at the most, her period would come but it would be heavy and she should pray to the good Lord because she quite likely could die. She took the herbs and, “cabal” (exactly), on the 15th day, all that dirtiness started coming out but in fountains. She bled for a month. She said she had to be hospitalized and get many bags of vitamin water (lactated ringers) to save her life. She took a year to recover her strength. She got pregnant twice more, both difficult pregnancies. Her last baby was “puro ratoncito” (a little rat, meaning premature and small). That child is still very malnourished at 1.5 years. She attributes all of her current health problems and this unhealthy last baby to the depo. She explained to me that the depo left her “damaged”. Her pregnancies used to be easy, pain free. After the depo, she had swelling and back aches, and abdominal pains with her pregnancies. (This brings up another interesting and challenging issue in caring for patients here: given that they so distrust western medicine, anything you pressure them to do, including things as simple as placing as IV, can forever be thought of as the reason for any future problem. I’ve certainly kept this in my mind as I try to push things through with Herlyn’s heart evaluation and surgery).

I listened for over an hour to her tell this story. She felt passionate about how terrible the depo was for people and that, if not for God bringing her to this naturalist in the town square, she would have continued the depo and died. She is sure her current suffering is because of the medicine and is determined that other women know how dangerous it is. Estefany’s mom, only 22, has 3 kids and would like to slow down the baby-making. But her mom definitely won’t let her get injections. She did use depo for a short while and, as grandmother tells it, became very pale and weak and could barely get out of bed. On stopping the injections she quickly recovered to her normal self. She’s not doing any family planning now despite wanting to and despite being extremely poor and barely making ends meet to care for her family of four.

I commented that I was surprised the depo had caused so many problems in the women here because it’s widely used in the US and Europe and I haven’t heard of these particular experiences. I did explain (and wondered if the doctors ever did) that not getting a period is normal and the blood does not build up inside. I also explained that irregular bleeding for up to a year afterwards is pretty common but excessive bleeding, like she described, is extremely rare. She said she wonders if we (in the US) get special medicines. She doesn’t know if they just get sent the bad stuff because it’s cheap or because her government wants the Maya people dead. She added, at the end, that maybe Mayans had different body systems than white people and this medicine wasn’t for them. That certainly is insightful; I doubt depo has ever been tested in a Mayan population. It might sound crazy that they could be so different as to not tolerate a natural hormone like progesterone but it’s hard to cast away the theory when it’s true that medications are often only tested in white people and, certainly, other treatments have been shown to have different effects in different races. Or is the power of suggestion strong enough to account for this?

I asked her about the pill. Her first question for me was if it would be ok to dissolve the pill first so you didn’t have to swallow it. I could tell this wasn’t an issue of trouble swallowing pills but, somehow, a sense that it would be less toxic if dissolved first. I said I thought that would be fine if all of it was taken. She was really excited to learn that a period would come each month (despite explaining that, at first with the depo she had been thrilled not to have her period … less laundry!).

Having talked with several adult women who have large families, I have learned that many, many did not want as many children as they had. They either hadn’t ever heard anything about how to prevent pregnancies (Angel’s case) or they heard horror stories like this. We gringos, myself included, quite commonly ask why poor people have so many kids when they can’t even take care of the ones they have. Family planning is an easy, responsible solution to a problem that keeps people impoverished and cheats the kids that have already been born. Sometimes I feel like family planning is as far upstream as we can get. Imagine if families had just two kids each. Our development and relief services would go so much farther; hopefully become less needed. Our schools could teach better, there’d be more food on the table, there might be money to cure an illness, parents could work while grandparents cared for kids, disease wouldn’t spread so quickly if 5 family members weren’t crowded into one bed. But maybe family planning isn’t as easy and obvious a solution to people who have so have repeatedly fallen victim to attempts at extermination by their government, to people whose doctors fail to explain how a medicine works and likely side effects, to women whose husbands equate birth control with cheating, to women whose religious leaders and grandparents equate birth control with a rejection of gifts from God. How can we tackle this issue?

Cleft Lip and Palate

Today I visited a new baby with a cleft lip and palate. We found out about the baby when a friend of Ana’s came by to see if she could help the family with some good advice (apparently, they’d received plenty of scary advice like, “babies like this can't live” and “the surgery costs $6K”). Ana boiled all Francisco’s bottles, including the Haberman I’d given them (thanks Bronwyn!). Ana had gone through several different types trying to find one that would work (Francisco lost over 15% of his weight in 4 weeks and didn’t gain until 2 months of age), so she had quite a stash. I hadn't heard this but she told the other baby's mom that they didn't even have syringes when they left the hospital (despite delivering in the Parrochial hosp they got no counseling or support with regard to the cleft) so they dripped milk in to Francisco's mouth from the corner of a cloth (her own milk had dried up immediately due to "susto").

Last night when Angel heard us talking about the baby he chimed in that the recent earthquake was probably what did it. Ana agreed.

We went to our neighbor’s house on the way to get the breast pump I’d loaned them 8 months ago and they haven’t returned despite 3 requests and lots of promises that they would “bring it right by”. They didn’t have it on hand so promised to “bring it right by” (that was 9 hours ago now).

The family of the new baby (12-days-old) was living in a sugar cane house with a dirt floor. Mom is 32-years-old and has 7 kids, all healthy until this little boy. He was delivered at home 8 days ago and they haven’t seen any doctors since then. Mom had a good milk supply and has been expressing several times a day but is only getting an ounce at a time now. They are formula-feeding by syringe and the boy actually looked very good. Pink, alert, hungry. He was already peeing well and his poop is yellow. He has a bilateral lip cleft but a perfect nose. His palate cleft is very large, leaving only gums on either edge.

It was such a good experience meeting with the parents. They are devastated and cry each day but love the boy and are giving him all the care they can. Ana and the mom talked about their first emotions: their devastation, their confusion, their exhaustion. Mom’s face lit up as they talked. After a bit, I started to talk a little business. I talked about how this was no one’s fault and the cause is unknown, that feeding and talking and maybe ear infections are likely to be his biggest health challenges but that the rest of him is healthy, that the surgery can likely be done with visiting doctor groups for free, that the surgeries probably won’t be complete for several years, and that preserving her breast milk supply would need to be a big focus of ours now.

It was interesting to see that, while they listened to me and asked some questions and seemed reassured by some things I said, they turned to Ana for nearly all their questions and doubts. Like, if they got the surgery done with visiting doctors would it be done well or was it second-rate surgery. Like, why if she took all her vitamins and went to her prenatal visits this time the baby turned out wrong but the other kids are fine and she didn’t go to all that trouble. It emphasized to me what I have been seeing here, which is that gringo doctors aren’t the cat’s meow like we are often predisposed to think, but that patients are so much more comfortable with their own community members. It was invaluable that Ana was there (though I’d been dreading all morning what things she might tell the mom that were incorrect…I’d actually talked myself into a calmer state by recognizing that it really wasn’t very important that the mom know eclipses and earthquakes don’t cause clefts or that she know that his being dark skinned was not actually a sign that his hemoglobin would be higher and he could have his surgery sooner or that he didn’t need to put wild plants in his shirt when people visited to ward off the evil eye; Ana did tell the mom all these things but maybe it was better that way; better that she spoke in terms the mom related to so that the other pieces of important advice: feeding, pumping, bottle cleaning would be believed).

Ana and I went through the different bottles with the mom. I refrained from pushing the Haberman and let Ana push the Platex (the one she’d had the most success with) and, truthfully, he did best with the Platex, taking 3.5 ounces and relatively quickly! He is a super feeder, something I really can’t explain given the extent of his defect.

I left the house feeling very optimistic for this family. Ana and her sister are going to visit again Monday. Ana’s going to visit the hospital and ask that they cover the cost of the bags for the bottle (the Platex bottle has a compresible bag that will let mom squeeze the milk into the baby’s mouth and control the rate) and any extra formula needed. I think this visit was especially important for Ana, very healing. She can feel, despite (and because of) all the suffering she went through with Francisco, she is now improving, maybe saving, lives of other babies.

Now I just need to get that darn tiraleche (breastpump) back from my darn neighbor!

Sleeping with a smile after his big feed!

Cold Weather and Illness: A Word from Mexico's AAP

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.

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?

Herlyn and his dad (after 2 weeks on furosemide and digoxin)

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)

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?