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.

Easter - Gringo Edition

Here in SLT, Easter Sunday is celebrated with morning mass and a stroll by the Lake. We thought we'd share our tradition of the Easter Egg Hunt. I tried to come up with a complicated explanation for the tradition by claiming that Easter Eggs represent a story in the bible in which Elizabeth's eggs turned red when she became fertile again but I got voted down by my gringo friends and ultimately Wikipedia betrayed me and left me with no better explanation for an Easter Egg Hunt than that eggs are a symbol of new life and kids love candy.

We dyed eggs on Saturday ... 60 in all for the 10 kids. And then got the adults to help us hide the eggs on Sunday morning. Canche was up earliest and asking about the hunt all morning but we didn't get started until 10:30. Mom and I had time to get to the market and get started on our lunch for the whole gang of grilled cheese and tomato soup.

Anyway, the kids had a blast searching for their eggs and playing egg-games after the hunt for prizes. Angel told me this morning that little Canche was up until 11pm re-hiding and re-finding his eggs. He is great at entertaining himself!

Semana Santa

The Julajuj's alfombra on the street in front of their houseHow it all started: dying sawdustThe were over 20 of the large bags full of dyed sawdust by the time we finishedAngel preparing the designs to fill with sawdustMaximon, a Myan icon (Judas for the Catholics), hung at the church entrance on ThursdayThe family decorated and raised a big arch for the procession to pass under on FridayFriday morning, opening the first bag of sawdust for the alfombraEvening out the sawdust that would form the base of the alfombra

Group photo as the carpet is finished and the procession approaches from the church Father Greg helping carry the procession
Maria Elena's son, Rudy, has the honor of leading with the incenseAnd the electric generator-man follows so Christ can be illuminated by florescent lightsThe aftermath ... kids feverishly gathered the sawdust to play with later

Angel's family watching the procession
Young spectator in traditional San Lucas traje

The alfombra leading out of the church...in the making Designed after the pattern on the San Lucas traje
Other alfombras in town

After all the processions and alfombras, Maximon got carried back to the cofradia and was re-built.