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?

Principles or Patient

Three weeks ago, while doing house visits to measure kids in the community of San Gregorio, we checked on a 5-day-old newborn. The mom is about 17-years-old; her first baby (in fact, you can see the mom in one of the pictures in the ORS entry ... two months before the baby was born). The baby was very small, probably 4.5 lbs and looked to be about 35 or 36 weeks gestation. She was jaundiced to her toes and the mom's milk was just coming in.

I told the mom that I thought the baby should come to the clinic to get its bilirubin checked and maybe stay a bit to ensure the baby could feed well enough to gain weight. I was pleasantly surprised that she considered the idea of coming especially given that I told her that if the level was high, I'd have to send them to another hospital for phototherapy. The mom said she needed to confer with her mom and she would get back to me. I offered her a ride with us so it would be free and told her we'd return in an hour to check back with her. When we returned, she'd talked with her mom who was willing to have the baby get the test but was concerned about the cost. I told them we'd ask the Parrochia to do the tests for free and I'd give them the pick-up fare to return home. They came with us and the unconjugated bili level turned out to be 26. When I explained the risk to the baby and the fact that they needed to go right away to Solola, they were reluctant. They wanted to return home for diapers and a change of clothes and would try to go in the morning. Thankfully, I was able to convince them to go right away in the Parrochial ambulance as long as I could give them some money for the mom's food there in Solola.

The issue of giving money to patients for treatment comes up a lot. The Parrochia insists that all patients be referred to the hospital director, Pablo Benedicto, and if a true need is evident, they will cover the costs. The principle is good, I think. Rather than foreign visitors doling out money here and there and people becoming accustomed to seeking financial assistance from gringos, a central system that accepts the donations from gringos to support itself but reviews and records each request should be more sustainable and fair. But that's the principle. The hospital director isn't a social worker and the Parrochia has many projects other than healthcare so not all patients who need help get it.

I decided early on that I would try to funnel patients through this Parrochial system but if they weren't going to receive the support they needed and I was going to lie awake at night worrying for the patient, I would pay. I decided that after a traumatic experience in October in which a family brought in a very seriously ill child and refused hospitalization, taking the child home. I was sure he would die if they did not seek other medical care and wondered if I could have prevented his death by offering to pay for the medications (hosptalization at our clinic is free).

Anyway, so I agreed to give some money to the mom for food in the days to come and for grandma to head home. They went to Solola and I saw the mom and baby one week later, just after discharge. The baby was sent home with a script for Augmentin for no clear reason, some preemie formula, and was to be seen in Solola the following day. Mom wanted some money to pay for the Augmentin (by now, I was feeling very invested in this child and would have been happy to fund the med but it was especially hard for me to convince myself to pull together money for a medicine it seemed was very likely unnecessary). Fortunately, the Parrochial pharmacy was willing to pay for the medicine. Overall, I was happy with how things went. At last, a succesful intervention!

A couple of days later, Vicente told me the grandmother had come to his house upset. The baby, it seems, was sent straight from its appointment in Solola to Roosevelt, the national hospital in Guatemala City. It wasn't clear why the baby was transferred but the grandmother said her husband was now upset. He complained that there was no money for all this care and that if the gringo doc had wanted to take the baby away for who-knows-what medical intervention, it should be the gringo doc who paid for the costs. Vicente explained that we did what we did out of concern for the baby. The grandma acknowledged that she was appreciative but didn't know what to do about her angry husband, her sick grandchild (she knew very little about why the baby was transferred and how she was doing), and her young daughter alone in the City without money for food or to call home. They asked Vicente for money for their transport the next day to see me in clinic to talk about all this. He was kind enough to give me a heads-up.

The grandmother was there at the hospital when I finished rounds. She was near tears, fearing for the baby and not knowing how to get the money they needed. Apparently the hospital was requesting 300Q for a head imaging study (hospitalization is free but studies and meds aren't)after having found blood on the brain in Solola. (I really couldn't imagine what the doctor in Solola must have seen to make her look for "blood on the brain" and how they found it and what would have triggered the transfer. As with the Augmentin, I wasn't excited about donating a sum of money that would cover a good deal more were it spent on a nutrition day or many of the other things related to the health promoters that require financial support, esp when it was so unclear that the test would be necessary. I should probably trust the Roosevelt doctors more than I do but I have seen so many more frivolous medical interventions here than reasonable ones). I asked her to talk with Pablo Benedicto and request assistance, letting him know that I had sent her.

She came back to see Vicente some days later saying that the baby was not getting better in Roosevelt, grandpa was still upset about the expenditures, and they were starting to sell things to pay the bills. She said she'd gotten help from Pablo Benedicto but now she needed more help. Vicente and I tossed around ideas on what to do. I felt like I just couldn't wrap my head around this without having some understanding of what illness they were treating the baby for. We decided to try to arrange a trip to the City so I could talk with her doctors or look at her chart (apparently, I wouldn't have been given any information over the phone). As Vicente and I worked on options for getting to the City (7 hour round-trip and about $100), he touched base again with the family. The baby, they reported, was now turning the corner and would likely be home soon so we didn't need to visit but they did need 160Q for 4 ampollas of medicine. Vicente asked me if I could pay that.

I was unsettled by his request and even more unsettled about my response. I said that I would need to know what the medicine was (vitamins come in ampollas and are very often prescribed. I wasn't going to spend $20 on vitamins) and, even so, would again recommend that the family's first stop be with Pablo Benedicto as he'd been responsive so far and that would keep them working within the system. Vicente agreed to talk with the family again and get the name of the medicine. I felt awful and wasn't sure why, if I was doing what was right, I would feel so bad. Why didn't I just pay for the medicine and settle the issue? It would have been easier than feeling terrible.

As I gave it more thought, I clarified my reasons for answering this way. 1) These last two weeks I have been asked for money for medications or food or some other emergency more than in all the months I've been here (it has actually been very rare that someone has asked me for money). Every time I gave the money, usually couched as a loan by the borrower but clearly not one, I felt bad. I felt that I'd taken the easy way out and I might be contributing to a problem of people feeling that the only solution to their lack of resources is gringos. I guess one might imagine that this concept could give people low self-esteem, encourage manipulation, discourage true problem-solving (that's certainly the way the Parrochia puts it). 2) This family has frustrated me a bit. It seems that the story of grandpa being upset might reflect their feeling that this is my problem and my responsibility rather than theirs. It is their child/grandchild and they do need to take some responsibility -- this will not be the first or the largest of their expenditures for the child (or for the many children to come). 3) I wanted to encourage the family to work within the system, feeling that any support they got came from the clinic rather than that they got it from a gringo (for the same reasons mentioned above).

But, I knew that for all the reasons above, there were as many reasons to have done just the opposite -- paid the money for the medicines. 1) I have money (and what they need is relatively such a small amount) and they have very little. Even if they aren't taking full responsibility for this baby, they are struggling and hurting and looking for whatever support they can get. 2) The baby is a living being that deserves healthcare and I should do whatever I can for the baby 3) By giving the money, I would show compassion for the family and help them feel that they are valued people and that their children are important, giving them more esteem. 4) I know that logistically, going to Pablo Benedicto will be near impossible. They won't be able to tell him what medicine is needed or show him proof (the script is in the City) and they would have to pay 10Q in fare just to make the trip to talk with him.

This conundrum left me thinking about how easy it is at times to reassure ourselves that we are doing the right thing because the principle is right but we really aren't doing the right thing -- we aren't showing compassion in an unjust world. It may be easy to be reassured that we are following our principles but when a little baby is struggling against a system that put her at risk just for being born to a poor family, accepting this reassurance seems more like cold, heartless denial.

I talked with Vicente tonight and he gave me an update. One of the medicines the baby needs is Pulmicort, 4 ampules. Once again, I can't imagine that this is truly needed (esp as just 4 doses) but I just can't stand to keep worrying about this family. I told Vicente I would pay for the medicines but that he should let the family know that it was money he was able to secure from the clinic. And, he's going to try to get me the baby's diagnosis.