Health Promoters: Teaching Soy

De-husking the soybeans
Soy milk from liquified soy beans

Soy milk
Straining the soy milk to extract the masa

Fine straining with a cheese cloth (ok, improvising on the cheese cloth)

Cutting vegetables for the soy fritadas

Soy milk with sugar and cinnamon

Soybean masa

Hyperbilirubinemia, Update

Some of you might remember the baby with hyperbilirubinemia from my “Principles or Patient” entry a couple of months ago. She was a 5-day-old estimated ex-36 week gestation baby who I came across during a community visit who was bright yellow and very scrawny. She had been born to a teenager who still didn’t have much in the way of breast milk in and only sugar water to give as a supplement. I pressured them to come to the clinic for a bilirubin check and found the bili to be 26 and pressured them, again, to go to the national hospital in Solola for phototherapy. Initially (in the first day or so after finding her) I was feeling good about this case. Here was a baby with a relatively simple, reversible problem who, because of the good fortune of having the house-to-house visits as part of the health promoter program, was identified and would be saved from a probably destiny of kernicterus-related brain damage or maybe even death from failure to thrive in the first weeks of life. But I quickly despaired as she took a turn for the worse and ended up in the national hospital in the City (Roosevelt). I felt terrible for the family as the weeks and then months went by and I knew she was still hospitalized. I suspected that they must have found some serious condition and were trying to get to the bottom of it. I have to admit that I did wonder at times if I’d cost the parents (in terms of money and emotional resources) something they weren’t prepared to “spend”. In otherwords, was this a baby that was “supposed to die” and I’d paternalistically, confidently come in and tried to save the day in a place where babies that are “supposed to die” and are saved can compromise the health and future of the whole family as they drain all the resources. I don’t mean to say that I believe in a concept of “supposed to die”, as if some babies are marked to make just a quick trip to the world and then they are to die and we shouldn’t be trying to save them. Rather, I’m thinking more about a principle of nature where only those who can survive in a harsh environment survive. Stepping in to save one who wouldn’t have survived may be fine if you are there to continue to care for it but if you aren’t, is it wrong? What if the hospital found liver failure? Would this baby have been better off passing away from failure to thrive leaving the family to mourn but move on? What would it be like for them to put themselves in debt, struggling to care for this seriously ill baby, only to have it not make it or make it but with a condition the family couldn’t continue to care for in rural Guatemala? All these questions were going on in my mind as the months passed.

Today I finally saw the family: the mom was now home from Roosevelt with her baby. My happy relief at seeing them out of the hospital and back in their village melted into pure sadness, confusion, and indignation as the mother recounted for me their last three months.

She told me that when she took the baby back to Solola for the bilirubin follow-up check (after 5 days of phototherapy) they had to re-admit her because she had a fever. Soon thereafter, just following a shot, she had a seizure and stopped breathing. They intubated her and did some studies that showed her platelets were “way too low” and she was “bleeding all over” including her brain (it’s not clear to me how they would know about the cerebral bleed as they have no CT or MRI there…maybe US but somehow I doubt it). She said she heard the nurse say to another nurse “surely we mixed up the medicines” giving one that had been meant for another patient. She said she tried to ask questions but they got angry with her, saying “we weren’t talking to you”. They told her the baby needed to go to Roosevelt by ambulance and would likely die within an hour, before making it there. She started to cry and said that if the baby died she’d come back to the hospital not with the baby but with a lawyer. She said the doctor laughed and said, “your baby isn’t the first baby to die. We have babies die all the time.”

She got into the ambulance and just a half-hour from Roosevelt, the ambulance had to swerve because of an accident in the road and the breathing tube came out. The baby’s heart stopped. They attempted to rescucitate her but couldn’t and let the mom know she had died. The mom said she was hysterical. She said they pulled into Roosevelt and unloaded the baby slowly because she was dead. But the doctors there began to put “irons on her chest” (defibrillate) and chest compressions. They were successful in reviving her and took her to the intensive care unit. There she remained intubated for one month. At one point she needed to be put on a high-frequency oscillating ventillator. The mom said other patients told her not to let the doctors put her on that machine because it blows too much air in and the babies on it always die. But, thankfully, she only required a few days on it and then stabilized. Over the course of her time in the ICU she had three separate paros cardiacos (asytoles) where they had to do chest compressions. But, ultimately, she did stabilize. Thereafter, she was sent to the wards. Her mom said the baby had lost down to 2 lbs from her 6lbs at birth (something that is surely incorrect…maybe 2 kg). One day she vomited and stopped breathing. She had to be intubated again but recovered from that setback quickly. Overall, she spent 2.5 months in the hospital.

I asked if the doctors had given her a diagnosis and she said they hadn’t. I asked if they’d given her any papers. She said she’d asked for some papers telling what the baby had but the doctor had said he’d already given her information so it would take too much time to do it all over again. I asked, “so, he had given you papers then.” “No,” she told me, “he’d talk to me every couple of days and give me an update.” “Did they ever tell you what had happened in Solola that resulted in her having to be transferred?” I asked. She said they’d commented to her “de plano que le equivicaron con la medicina” (Surely they gave her the wrong medicine).

I asked what kind of prognosis they gave. She said “no me dieron mucha esperanza” (they didn’t give me much hope). They apparently told her the baby would probably not be able to see. But the mom explained to me that she thinks the baby can see. I asked if they sent her home with any medications. They’d sent her with two. One was vitamins and the other she couldn’t remember but she didn’t buy it because there wasn’t any money. And they also wanted her to use an added-rice (AR) formula but they hadn’t been able to find that anywhere. She said they’d told her the second medicine was very important and that she would die within a month if she didn’t have it. I left her my cellphone number so she could call me with the name of the medicine.

So, I had a lot of thoughts going through my head after this conversation. Just like with many other conversations I’ve had with people about their time in the hospital, I was left very confused; trying to piece together something that made sense. She described the defibrillation, the intubations, the high-frequency vents well enough that it did seem like she had a pretty good sense of the series of events, at least. The comments by the doctors and nurses are almost impossible to believe but, then, stories of callousness and disrespect are the only stories I hear from patients who have been to the national hospitals (including patients I know very well and feel I can trust, like Vicente). Maybe she really was treated like that. Why did the baby get sick so suddenly when all it seemed to have was hyperbili and mild prematurity with some feeding difficulties. Was there really a medication error or did mom just misinterpret circumstances (coincidences like the seizure just after the shot and maybe a misunderstood conversation by the nurses). I’m inclined to believe there wasn’t a medication error and, rather, the baby became septic for some reason, developed DIC, dropped her platelets, and had a head bleed. Did the doctor really laugh at the mom? Did he really say that she wouldn’t be the first to lose a baby?

I do believe that there were no records and that surely they would have refused her request to give her anything in writing. That’s just the way it is at the national hospitals. They are so overworked and understaffed that there are no hospital summaries or even diagnoses recorded for the patient at discharge. It’s terrible for care. I never can figure out what my patients coming out of the hospital had done there or what ongoing care they were to get. And no one will probably ever know what happened in Solola that accounted for the baby’s crash. If it was a malpractice issue, it’s now ancient history. There is no such thing as malpractice suits here in Guatemala. Without records, how would anyone ever win such a case anyway?

How unjust is this system that a young mom, trying to pull out all stops for her daughter, has to rely on a hospital where the care is of questionable quality, the information provided to her and other practitioners is next to nothing, and there is no accountability for the care that is given (or fails to be given)? How can I pressure other parents to take this step with their child? This baby is likely to end up severely mentally retarded, blind, and handicapped. She will have little in life given that she won’t get special education or physical therapy. Mom may never find a husband if she is caring for such a child. Maybe she’ll have a series of fatherless children and will struggle greatly to feed and clothe them. The family will live their whole life thinking that all the harm that befell their child came from doctors. They may not seek medical care in the future or will wait to do so until very late in an illness course. And we (visiting and local doctors) will criticize them for not trusting our advice and care, for not seeking care on time, for not finding a way to provide enough food for their children. And we will forget (or will never have known) why the family feels the way they do about doctors and western medicine. And they will share their experiences with their relatives and neighbors and even more families will shy away from clinics and hospitals. Certainly they will shy away from gringo docs passing through towns offering medical advice.

How could it be that families have no ability to investigate or collect damages from doctors who carelessly harmed their children (whether that happened in this case or not)? What keeps doctors in line and makes sure they treat patients with respect, keep studying the literature, avoid toxic treatments, provide high quality care? Nothing! Is that why it is so common to find patients treated by other doctors here who got a treatment that doesn’t make sense to me (and often find patients treated in frightening ways). The injustice of poverty permeates everything. It isn’t just about not being able to buy medicines or pay for a doctor visit. It’s about all the things that make this case so devastating.

Hippocratic Oath—Modern Version

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University,

Health Promoters: Anti-Itch Soap Lesson

Collaborating with moms of San Juan Mirador
Three HP's: Silvia, Dominga, Veronica working with manzanilla

Hmm, what's in that belly?

Dominga boiling manzanilla and melting soap base
Why lung disease is endemic in women
And burns common in kids

Anti-itch manzanilla soap


Dominga and Vicente teaching about skin care and disease - GREAT drawings by Elena

Health Promoter Course: Environment and Disease

Health promoters working together on a puzzle

Delma and Michaela sampling water from TotolyaClara sampling water from Panimaquip Water samples from six outlying communities and San Lucas (Lago Atitlan) undergoing a 24 hour incubation with a yellow powder that turns black in the presence of coliform bacteria.

Teaching about malaria
Vicente proudly displaying his "clean water" result from Quixaya

Dominga displaying the results

Class of second year promoters and their instructors, Vicente and Dominga

Chiquita's Puppy

Chiquita's a new mommy of one little boy pup!

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?