11 Sept 2012
I called patient number 17, the next on the list, and was excited to spot a mother urging her little boy to stand up. We tend to see more adults than children in our clinic; the children are always an enjoyable change. They walked over together hand-in-hand and I showed them into the consult room. From the chart I saw their names were María and Josué, and that he was 6-years-old. They sat across from me and I asked why they came.
“Josué’s been complaining of knee pain for a few months,” María said.
A few more questions showed me that there was no inciting trauma, the pain was in both legs located just below the knees, and that it is brought on by a lot of activity.
“Does Josué run around a lot?”
“Oh yes. He runs and plays todo el tiempo. I can’t keep up with him.”
María had never seen him limp. She had not noticed that his knees were red, warm, or swollen. They have no family history of rheumatoid arthritis or other autoimmune disease.
Growing pains were quickly rising to the top of my differential.
I said, “Does he have any chronic health problems?” to address Josué’s health history. I was expecting the answer to be “no” and I had started to put my notes away, meaning to quickly move on to examining Josué’s knees.
The words “heart problem” stopped me in my tracks.
“He has a heart problem? What kind?”
María said she had been told he has an arrhythmia, an irregularity in the heart’s electronic cadence.
It is common to hear heart murmurs in young children. Perhaps María is confusing the two, I thought. I asked her specifically if she’d been told arrhythmia or murmur, and about who had told her.
“Arrhythmia. A pediatrician we saw when Josué was little, maybe two years ago.”
My questions must have worried María because she began frowning.
“She told me to get un ecocardiograma, but we don’t have the money. And he’s been fine. He never gets sick.”
An echocardiogram, commonly called an echo, uses sound waves to create an image of the moving heart. If the pediatrician had suggested one, she probably had a non-trivial concern. I began a new line of questioning: Josué has not had chest pain; He does not get tired easily or have trouble breathing; He has never fainted or even complained of being lightheaded.
When I listened to his heart the beats were regular. Lub-dub. Lub-dub. Lub-dub. And then they weren’t. Lub. Pause. Dublubdublub. Pause. Lubdublub. I did not hear a murmur.
I knew I would have to ask a Guatemalan doctor about what should be done. Before going to Hugo or Wilder, I wanted to check Josué’s knees. They were not tender. Neither were they red or swollen. His range of motion was good. I had him walk, run around the room, even jump. He excitedly and forcefully jumped several more times, without my asking.
Excusing myself, I left the room and found Hugo in-between patients at the pharmacy. Hugo agreed that Josué’s knees were not worrisome and likely due to growing pains. He was, however, quite concerned about his heart.
While coming back to the room with me, he wheeled out an EKG machine that I didn’t even know the clinic had. An EKG is used to trace the heart’s electrical activity. Unlike an echo, it does not provide a direct visualization of the heart. It is also much less expensive. Hugo confirmed my history and exam before we began setting up the EKG.
I am embarrassed to say that despite several rounds of study of this topic, I still don’t have a good grasp of EKGs. Josué’s looked basically normal to me with a little strangeness that Hugo called, “a little bit of a conduction abnormality.”
“Like Wolf-Parkinson White?” I asked.
“Similar, though not that. I think he may have a valvular abnormality.”
Josué’s mother again asked, worriedly, if she should have gotten / really needed to get the echo.
“An arrhythmia could mean there is something wrong with the structure of the heart,” Hugo replied. “To see his heart well, the best tool we have is el ecocardiograma. Josué’s been fine, gracias a Dios, but he may have problems in the future if we don’t figure out why he has an arrhythmia.”
In Guatemala, technically, if you cannot pay for healthcare the government provides it for free. But this comes with many caveats. The public hospitals that provide these services are only in the capital cities of Guatemala’s 22 departments (states). This means a lot of travel for much of the country’s indigenous population that they cannot afford, in money or in time. The hospitals are crowded, understaffed, and disorganized. This translates into long waits, being shuffled around and sometimes asked to come back another day, ultimately long and arduous experiences for patients. The alternative is to pay to see private providers, well in excess of the income of all but the small middle and upper classes.
Hugo explained that he was going to write a referral to a public hospital pediatric cardiologist. “If one of the hospital’s doctors orders it, you can get the echo for free.” He urged María to arrive to line up before 7am, to increase the chances that they are seen the day they go.
María began to tear up. She hadn’t realised there was a way she could get the echo for free.
To finish the encounter I wrote the referral for Hugo to sign, told María why we were not worried about Josué’s knee pain, and brought them two-months’ worth of children’s vitamins from the pharmacy. I asked her to come back after getting the echo. “We would like to see the results, and we can continue to care for Josué. Please also come back if his knee complaints change or worsen.”
In the US we probably would have gotten a knee x-ray, at the very least to cover our asses, but you can’t use resources like that in Guatemala. Instead you follow a rubric of (1) likeliness of disease / (2) empirically trying treatments / (3) the cheapest tests / (4) changes in symptoms over time –– making for the most inexpensive but least time efficient means of arriving at a diagnosis. With limited resources, it’s the only way that will work.
In thinking of María, part of me is amazed that she didn’t follow through on Josué’s heart problem for two years. In her place I would have been worried everyday in-between hearing “arrhythmia” and receiving the results of the echo, anxious to hear either good news or instructions on what to do next to ensure my son’s health. Instead she brought him in for something completely unrelated, knee pain, though he is able to run around all day.
But part of me understands. As far as she knew the echo was out of her reach. I also wonder if the pediatrician explained the importance of following through, or explained it well enough.
And Josué by all outward appearances had been healthy.
One quickly learns that in Guatemala you don’t deal with something, you often can’t deal with something, if it isn’t an apparent problem. And sometimes you still can’t deal with it even if it is. I am not tall yet I stand taller than all the Guatemalan women I have met, and many of the men – part of this is genetics; part of it is that this country has the highest child malnutrition rate in the western hemisphere. Adult health problems are ignored until the symptoms are bothersome – an elderly man came to clinic because he had started to have mild headaches; his blood pressure was 210/100. The clogged drainage system goes forgotten – until it rains and there is flooding in the streets.
You probably won’t get your son an expensive, and alien, test when the immediate dilemma is feeding him.
Perhaps if I were in María’s place, really in her place, I would have done the same.