I’ve had a little dry spell as far as blog-worthy cases. Sometimes that’s a good thing. I would never consider it lucky to be an ‘interesting case,’ in medicine.
Yesterday, however, met my quota for the week of ‘tough’ cases.
We get whole families who travel from afar to seek our help. It’s not unusual to see 6 people from the same household who have travelled for hours to the Gringo hospital. Sometimes they come w/o an appointment even, just hoping they will be seen. Usually there is at least one or two of them with something serious, and the others are tagging along and just want whatever ails them peeked at while they’re here. Well, yesterday I had a heart-wrenching ‘2 for 1’ special.
Maria brought in 2 of her boys, Marvin and Josie. Marvin, 14, couldn’t walk. They wheeled him in sitting on top of a 4-posted wheeled walker. He was small for his age, with frail muscle tone, but carried a warm smile from ear to ear. Josie trailed behind, playful and mischievous. I would describe Maria, their mother, as somber. The complaint at the top of Marvin’s chart was ‘dystrofia muscular–duchenne’s;’ Duchenne’s muscular dystrophy. Josie’s was for ‘knee pain.’
In 13 years of practicing medicine, I have not personally attended to a patient with muscular dystrophy, let alone the most severe form, ‘Duchenne’s’. I had only read and studied it, and remembered in a general sort of way that it’s a really ‘terrible’ diagnosis. Sure, we’ve all seen fundraisers in support of this disease, but how many of us have seen it and understand its implications? Well, let me assure you that this is one brutal condition. Imagine knowing that your child will, beyond a shadow of a doubt, die in a fairly horrific manner; a slow, deteriorating fashion, culminating in the loss of function of many major muscles of your body, including the heart. By age 12 they usually lose the ability to walk. Eventually it affects heart and respiratory muscles, and usually ending in heart failure. This last part looks a lot like drowning to death, but you’re out of the water.
Now imagine a disease that has x-linked genetics. That means that the Mom is the carrier, and if you have one son with it, then all other son’s have a 50 % chance of having it as well. Maria has 3 sons: Marvin, Josie, and a younger one who didn’t make the trip. So it turns out that Josie’s ‘knee pain’ was actually weakness. And he had unusually large calves on exam, and difficulty getting up from a sitting position. So in my heart I already know that Josie also has this most severe form of muscular dystrophy. What about the third one? Time will tell.
Maria wanted a reference to any hospital in the United States. I understand this of course, as there are no lengths that I myself would not go for my children. Walk in front of a speeding semi truck to save my child pain, heartache, and premature death?—no hesitation, show me where to stand. There were 2 problems with Maria’s wish. One is that there is no way for me to refer her to a hospital in the US, it is a matter of citizenship and government. If a person can afford to fly there and pay out of pocket, then they don’t need the reference. But alas, Maria cannot.
The second problem is that it would not make a damn bit of difference. I say that out of sadness and frustration. I SO want to help this family. But my role here is to help them with acceptance, expectations, and putting the best care and support around them that is possible. And this can all be done just about as well in Honduras as it can in the States. I think the best thing I did for them was to make a special trip over to our counselling office and invited Oscar over to meet them, and pray in a powerful way over this family. And I ask for you who are reading this to also reiterate his prayer. A prayer for peace that transcends all understanding. Courage. Faith. A personal experience of intimacy with the creator of the Universe, for these boys and this mom to know that they are not alone, that there is a God that loves them so much. He cries at their suffering as well. He has a wonderful new body and an eternity of joy waiting for them some day, because He is a good Father.
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