Most refugee kids without families who end up in the US spent some time in refugee camps or in shelters or orphanages before they got here. That's where the United Nations encounters them, gathers data on them, and builds a case on their behalf. But let's be real - these are not always great places to live. Depending on the place they're in, and the country where it's located, it's likely to be a tough environment to live in. So luxuries like medical care are going to be spotty at best, non-existent at worst.
My kid spent some time in one of these environments before she came to stay with us, and while there was some medical care provided for her there, some of the things she's told me about it are laughable. And heartbreaking.
Like, you hoped that you didn't get a toothache because when it was time to go to the dentist there were no painkillers, no sterilized equipment, and no modern conveniences like x-rays. If you had a cavity or your tooth was rotting they just pulled it out, tossed it into the bucket, and hustled you out to make room for the next person. The waiting room was filled to brimming with people in pain. The dentist's office was an unpainted concrete room full of screams and other people's blood. It all sounded uncomfortably like something Hieronymus Bosch would paint on a rough day. (Although judging by his work, every day was rough!)
About a year after she arrived, we were having a conversation about her health and she mentioned to me that her heart was too small for her body. Wait, what? I was so confused. Is that even a thing? I told her I doubted that was the case, and she told me in no uncertain terms that she had been diagnosed with an undersized heart by a doctor in her country. Someone in the shelter where she was staying had taken her to see a doctor because she suffered from chest pains when she ran or played physical games outside, like soccer or tag, and the doctor had told her the trouble was that she heart was several sizes too small.
"...the most likely reason of all, may have been that his heart was two sizes too small."
- The Grinch
No joke. Like the Grinch, her heart was apparently two sizes too small. At first I didn't believe her. Then I did some reading and discovered that no, I was wrong, it really is a thing! Sort of... There's a condition called POTS, short for Postural Orthostatic Tachycardia syndrome, that sometimes gets called "small heart syndrome". But there's also Hypoplastic Left Heart Syndrome (HLHS) which refers to an underdeveloped left side of the heart (the aorta and left ventricle are too small.) And Chronic Fatigue Syndrome apparently also sometimes gets called "the small heart disease". Holy crap. I read endless articles on genetic heart conditions and medications and exercise routines and recommended treatments. And then I made her a doctor's appointment. We were going to get to the bottom of this.
We went in for a cat scan and low and behold - her heart was totally normal. What? So now she doesn't have an undersized heart? What the flagnog? What was that doctor over on the other side of the world even talking about? I asked her what tests they'd done to determine the size of her heart back in her country. Answer: apparently no tests. She had described her symptoms to the man in the doctor's office and he had said, "Oh, that's because your heart is too small for your body. Take these pills."
"So wait, they didn't do an x-ray?"
"What about some other kind of scan? Did they try to look at your heart?"
"So how could they tell it was too small?"
"I don't know. That's just what they said."
"And the medicine they gave you? Did it help?"
"Sometimes. They just said I wasn't supposed to run or play and I would be fine."
"Oh boy. Well, it seems they were wrong. Your heart is just fine."
"So what's wrong with me?"
"I'm not sure. We're going to have to figure it out."
And we did. Turns out it was nothing more than a mild form of exercise induced asthma! But that kid had lived several years believing one of her most vital organs was the wrong size for her body. Which is crazy, and all because some doctor out there had no idea what he was talking about. It made me kind of angry. But I also realize that's a dangerous minefield to navigate - and by that I mean the western mindset that says we have all the answers and people in third world countries are ignorant when it comes to medicine and health. Because that's clearly not true either. So how do you walk the line between getting the best medical care you possibly can for your kid, while still respecting their cultural beliefs about health and medicine?
"We look up at the same stars and see such different things."
- George R.R. Martin
It's a dilemma beautifully captured in the book The Spirit Catches You and You Fall Down by Ann Fadiman, which I read as part of my annual foster parent training. The book tracks the story of Lin Lee, the young daughter of a Hmong refugee family living in California. (They're originally from Laos, and left their country due to ethnic persecution that started in the wake of the Vietnam war.)
She's the first of the family's children born here in the United States. Fadiman explains that the differences between Hmong and American medicine begin before you're even born, with the way Hmong mothers give birth unattended and in silence in their home, drinking only hot water when they're thirsty, and with their children sleeping nearby.
She also explains the importance of the Hmong belief that a baby's placenta must be buried shortly after birth. The Hmong believe that a person's soul must retrace their steps after death to the place where they were born, in order to dig up their placenta and wear it as a jacket. This allows them to enter the after-life with their ancestors. Failure to locate and wear their placental jacket dooms them to a life of purposeless wandering. In the American hospital where Lin Lee was born, the doctors took away the placenta and incinerated it, which was the first step towards mistrust of western medicine for the Lee family.
Lia had her first epileptic seizure at only three months old, triggered by the loud slamming of a door. In Hmong culture, they believe that a seizure is not a medical condition, but rather a spiritual reaction, called 'quag dab peg', meaning 'the spirit catches you and you fall down'. In essence, your spirit is startled and it temporarily leaves your body. While American culture treats epilepsy as an affliction, Hmong culture believe that being caught by the spirit and falling down is a sign that you are fit for holy or divine work. Many Hmong people who suffer from epilepsy end up becoming healer shamans, which is a highly respected position in their culture.
The book documents the years-long struggle between the Lee family, who loved their daughter and wrestled between wanting her to be happy, and wanting to honor their cultural beliefs; and the American doctors who treated her, who were certain that her epilepsy (which was severe) would only get worse if not treated properly. Add to that the communication problems, because there were rarely effective translators available when Lia was brought to the hospital, and the Lees didn't understand what the doctors were doing to their daughter.
It's a struggle that p[lays out again and again in hospitals all over the west where refugees come in seeking health care (or are forced into hospitals to get help by police officers, emergency services personnel, or CPS workers who just want the best for whatever sick person they've encountered in the course of their duties). The cultural differences and communication break down cause no end of grief!
Fadiman explains in detail the many differences between American and Hmong beliefs about the body (like the fact that according to the Hmong, each person has a finite amount of blood and so blood draws are viewed as very risky, or the fact that to the Hmong an unconscious person is seen as vulnerable to evil spirits, so anesthesia is viewed as a very dangerous practice.) It was a very interesting book, and I loved learning about the Hmong people and their beliefs and culture. However it was also eye-opening to see how western medicine, despite our best intentions, can be viewed as dangerous and destabilizing to people from different cultures.
So what happened next? (Spoiler alert! If you want to read the book for yourself - which I highly recommend - and you don't want to know how it ends, stop reading now and go watch funny cat videos on YouTube or something instead.)
Over time, Lia's condition worsened. Her parents believed it was the fault of the American doctors who "gave her too much medicine" and interfered with her body too much. Whereas her doctors believed it was her parent's fault, because they didn't bring her to the hospital every time she was seizing, didn't treat her seizes as medical emergencies, and didn't follow the treatment orders they provided. The misunderstanding continued all throughout the story, and made Lia's treatment more complicated and less effective than it could have been.
In the end, Lia entered a vegetative state after a particularly severe seizure, and her doctors were certain she would die. Her parents took her home, continuing her treatment and care according to Hmong beliefs. Inexplicably, she stabilizes (which the American doctors say they would never have expected!), but never recovers. She remains in a vegetative state for years, which her family believes is because her soul has fled her body and cannot be retrieved. In the end, her doctor admits that the "too much medicine" theory may actually have some truth to it, as the medications he kept giving her masked other symptoms that he didn't notice, which caused septic shock and put Lia into a coma.
"Differences were meant not to divide, but to enrich."
- J. H. Oldham
There is no resolution in this story, and the ending isn't a happy one, per se. But that's not the point. If anything it does a beautiful but disturbing job of capturing the gulf that lies between western medicine, and the cultural approaches to health in other countries. Specifically, countries that are viewed by many Americans as having "backward" or "less developed" approaches to health care. So what can be done to breach this divide?
Well, the truth is there's no one solution. No magic wand we can wave to solve the problem. But one thing you (and I and everyone else) can do is to acknowledge that we don't know it all, and then make room to listen to what someone else has to say.
Western medicine is amazing! We have so much incredible technology that aids, prolongs, and betters life in so many ways. But we don't have all the answers. And we certainly don't get it right all the time. The fact that only recently are we recognizing the connection between mental and physical health in western medicine - a fact that's long been recognized in many of those "less developed" countries around the globe - just goes to show that we still have a lot to learn. So perhaps, all we can do for now is be willing to make room for someone else's beliefs while still trying to do our best for the kids we care for. Be compassionate and willing to learn. Be open to the idea that you might not know it all. Because even if you end up being right about something (which invariably means the other person is wrong about it), kindness and respect are still the best places to reach out from.
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