Sex, Drugs, and Public Health

 

         What the Guatemaltecos call their capital when they want to save syllables.

         Somewhere in the highlands, amid precipitous mountains and narrow valleys jigsawed by small plots of corn and squash, lives a seven-year-old boy with just one leg. Our hope is that we may be able to change his future.

         Dani has a congenitally absent lower leg on the left and a club-foot deformity on the right. Suspected cause: Amniotic Band Syndrome, a spontaneous development of scar-like bands in utero which physically stifle the normal stem-cell creation of extremities.

        U.S. surgeons From Operation Rainbow had operated on his right foot during a “medical mission” type trip a year ago. But they had no plan to help the boy post-op. Steve and Sandy, who volunteered with the fly-in surgeons as translators and logistics facilitators, arranged to get what Dani needed to function: a prosthesis on his left leg stump.

         This trip’s purpose was to check on Dani’s progress and assess whether more formal referral arrangements could be established for kids like him who lined up for help each time these surgery clinics came to the country.

 

 

         People park their wheelchairs on road medians all day to beg coins. A reminder of the likely fate of a physically impaired kid in a country as poor as Guatemala. And a reminder of what kind of life we want to help Dani avoid.

         He lives in a mountain town, a three to five hour drive over a very rough and dangerous road from the nearest city with resources. You appreciate the beauty carefully, lest you slide off the road and become yet another nameless cross.

         The folks who live in his town are primarily indigenous who speak Q’anjob’al, one of several Mayan dialects. Facility with Spanish is still limited here.

         What we found at Dani’s house was both disappointing and enlightening. He walked with crutches so smoothly, it was clear that he’d been using them, rather than the prosthesis, for a long time. Without crutches, he walked as clumsily as his handicapped chicken.

         Moreover, he held the prosthesis off the ground as he walked. We found that his stump had shrunken, was very loose in the socket of his prosthesis, and had already developed a couple of inflamed, sore spots. I was worried that the skin would soon break down, and probably get infected.

         Also, the brace which was meant to hold his surgically corrected foot in the normal position was ill-fitting and loose. Already his foot was twisting back to its abnormal position.

         He wore shoes with no laces – no support.

         The path to his house from the road was steep and slippery.

         The front patio of his house was of dirt (mud in the rainy season) and uneven. A poor surface to practice walking with a prosthesis.

         He has a supportive mother and family, but no father (he’s in “the North.” A place where, we learned by speaking to several townfolk, a large percentage of the men had gone. They work in the U.S. and send back money when they can).

         But Dani’s irresistible dimples show you how much he would love to run and jump and play soccer, like any other kid. His physical limitations show no signs of dousing his spark for life: he put on his prosthesis and followed us up the steep path between their corn fields as we left.

 

 

                                            The Plan

         We brainstormed Dani’s needs:

1. Re-assessment by the prosthetist who built his device. Problem is, that professional’s office is eight hours drive from Dani’s town.

2. A Physical Therapy professional to teach him and his mother how he should walk with the prosthesis and his club foot. Problem is, there are none in his town.

3. A flat surface at his house to get proficient at walking.

4. Some financial assistance to augment their expenses for travel, modification of orthotic equipment as he grows and wears them out with normal childhood activities, and school supplies (he has had very little schooling so far).

5. A model to emulate.

 

                                         The Model

         We followed up on a lead to find this 11 year-old boy, Mario. He was at school in Dani’s town, running and playing soccer. His prosthesis is a cheaper version than Dani’s, but his optimism and energy are similar. His deformities are congenital, like Dani’s. Our hope is that the two of them will bond and re-inforce positive aspects of living with prostheses.

 

 

                               Hue-Hue  (Way – way)

         What the Guatemaltecos call Huehuetenango, the city closest to Dani’s town when they want to save syllables.

         In this city, where the U.S. surgeons with Operation Rainbow conduct annual surgeries, we found:

• A professional out-patient Rehab facility which will work with Dani for $3 a visit;

• A local Rotary Club which, after we spoke of this case and our plan, has adopted the “Dani Project” under the direction of a physician who is a Rotarian; and

• An energetic community supporter, Manolo, who will bird-dog Dani’s needs.

 

                                         Xela (Chela)

         What the Guatemaltecos call Quetzaltenango when they want to save syllables.

         We travelled two and a half hours from Hue-Hue to this city, looking for the prosthetist who made Dani’s device. We found him. Showed him our videos and pictures, asked his advice. He had solid ideas of what will be needed in terms of prosthesis and braces. He offered us all the options but suggested the less expensive. We liked that having Gringosin his office didn’t result in his recommendation for the most expensive options.  Additionally, he will travel to Hue-Hue twice a month to see patients, including Dani. His taller (workshop) can manufacture whatever is needed.

           

         We felt comfortable with his honesty and knowledge. We grabbed cups of coffee next door to his office where the dueña had hung this poster:

         Translation: “Thousands of plants die each year because of Vegetarians. Save a plant! Eat tacos!”

         Food here was “basic” and, to decrease risk of diarrhea, we ate what had been cooked to high temperatures: beef (or was it leather?) and slow chickens (those tenderized beneath the tires of passing trucks).

 

 

                                         The Wedding

         Found a restaurant in an old Spanish-style building constructed as a large square with a central patio. The patio had originally been open – a garden – but now was roofed. We were the only customers other than a large wedding party. Sat in the second-floor balcony and watched the bride in Mayan dress and the groom dance on the patio below. When the DJ followed up a traditional song with Elvis (Jailhouse Rock), the groom discarded his jacket and the fun level increased.

 

         Due to the Mayan-Spanish-English language disconnect, the irony of the song was no doubt lost on the heterosexual bride, groom and guests. But Elvis still sang ‘Number 47 said to Number Three; you’re the cutest jailbird I ever did see – – – ’ as they danced their pre-honeymoon frenzy.

                                     The Waitress’  Story

         She was round-faced, with a smile of glittering teeth. As a wedding played out on the patio below, the topic of marriage somehow came up. She said she was 30. Two kids.

And a widow.

Husband was killed in what sounded like a brutal attack about which we didn’t request details.

         Financially strapped, she made a trip north, looking for work. Arrived at the Rio Grande across from Texas. She told us she had to pay $500 to be boated across or else face significant physical and sexual abuse.

         Once across, she walked north thru the scrubland until, dehydrated and on the verge of unconsciousness, she stumbled into a hospital E.R. in McAllen. “They were wonderful,” she said of the E.R. staff. They resuscitated her.

         But she was soon captured by I.C.E. and deported.

         Even for city-dwellers, life is not easy in Guatemala.

 

 

                                        Cardamom

         ‘Twas a surprise to learn that Guatemala is the world’s leading producer of this spice.

         High in a rain forest, where we bumped over a pass between the lowlands (Zacapa) and the valley area surrounding HueHue, we met an eccentric guy who raises bonsai and orchids while he manufactures machines to separate the seeds.

         This ten-foot high plant has very small white flowers at its base. The seeds develop there. For commercial use, the sprouted seeds need to be separated from those still intact. This drum, laden with wire spokes, achieves that as it tumbles the seeds.

 

         Try baking it into your bread. Or put a little in your coffee.

 

 

                                                  Church

         My skin puckered. I shivered. Déjà vu of medieval rituals from childhood.

         Although Fundamentalist Protestantism has made deep inroads into Latin America, many folks, including indigenous groups like the Maya, have transformed their traditional beliefs into Catholicism. The lady in the turquoise jacket was shuffling her way to the altar. On her knees.

         (Ah-h-h, yes, I recall: the more it hurts, the greater the ecstasy awaiting you. Someday. Maybe.)

         Down in the more sophisticated (and more European) city of Xela, this apparition issued forth one evening.

 

                                       Back to  Guate

         A U.S. and Guatemala based organization which provides prostheses and long-term support, Range of Motion Project (ROMP), looks to be a good resource for patients who live closer to the capital and the lowland town of Zacapa. They re-purpose expensive components from the U.S., manufacture prostheses in country and have made prosthetic hands with a 3-D printer. We arranged a referral pattern for future patients from Rainbow’s surgical clinics in Guatemala City and in nearby Honduras.

 

 

 

                                                FAKS

         This foundation, based in Sacramento, has supported children with burns who need surgery, and is now also willing to provide some financial support to amputees we identify via Operation Rainbow. With this crucial link, we believe there’s a referral system in place. Not an easy or perfect system – nothing looks to be easy or perfect in Guatemala, especially transportation. But support is there for Dani, and there is the potential for expansion of the system to other kids who will need it.