Dedication Meets Resilience

Last month, we teamed up with Range Of Motion Project (ROMP) to fit 7 people with prosthetic limbs. MHA | WK Complex Care Coordinator, Katia Cnop, shares their stories and her experience on attachment day.

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IMG_5565Katia Cnop is the Complex Care Coordinator for Maya Health Alliance | Wuqu’ Kawoq. She joined us at our Tecpán location in April 2015, after working for a small medical NGO based around Lake Atitlan. She graduated from the University of California, Santa Cruz in 2013, and drinks black coffee while listening to the NPR newscast every morning. She hates the feeling of stepping in a puddle while wearing socks, and looks forward to attending medical school at Burrell College of Osteopathic Medicine in 2016.



4.00 am

My phone is ringing in the other room, and I am brushing my teeth, waiting for coffee to brew, and hurriedly throwing items into my backpack– peanut butter sandwich, camera charger, camera, scarf, water bottle, cell phone…

“Buenos días Katia” a scratchy but sweet voice says across the line, “Estamos aquí, afuera.” – Good morning, we are outside.

I grab my bag, lock up the house, and walk to the street. Merida, our Complex Care Technician, is waiting in the front seat of a white shuttle. The hood of her pink Nike sweatshirt is pulled up over her long black hair and she looks just about as tired as I feel. Cesar, our driver for the day, thankfully looks more chipper behind the wheel.

“Buenos días, Merida. Buenos días Don Cesar.” I say, sliding open the side door and hopping in.

The shuttle slinks through a silent Tecpán – not even the roosters are awake yet. I cozy up to a glass window – we have a long day ahead of us. We are headed to the ROMP (Range of Motion Project) center in Zacapa, a 5-hour drive from Tecpán – when driven to directly. But we will make a few stops along the way, which will round our travel time out to 6.5 hours one-way – that is, if traffic doesn’t slow us down.

4.58 am

We pull up to our other clinic in Santiago Sacatepequez. Back in July, ten of our patients attended an ‘evaluation day’ at our Tecpán clinic. Seven of those ten qualified for high quality prostheses, and they will be the ones to receive custom-made prostheses today in Zacapa. A few slept here last night – a mother from northern Guatemala with her 1-year-old baby and 9-year-old son, a father traveling solo, a teenager and her mother. All jump into the shuttle, full of excitement and morning adrenaline, and then quickly fall asleep against each other’s shoulders.

6.49am

We are now in the concrete jungle that is Guatemala City. We have picked up another mother-daughter team, and are now headed towards to the other side of town to meet the last of the five patients who will journey with us to Zacapa. The last two of the seven total patients will meet us there.

10.07 am

I wake up to a pair of dark eyes in a sea of blue eyeliner staring at me through the open space of my car window. “Marañon con limón?” a vendor lady in a white tank top and sparkly apron asks, holding up bags of lime-covered cashews. “No. Gracias.”

We have stopped at a gas station outside of Zacapa. The road is lined with banana plants and it is hot – the air seems to hug my skin as I hunt through my bag for my water bottle. Most of the passengers have jumped out of our little transportation device to grab breakfast. They return holding an assortment of tacos, fried foods, and chip bags. Merida hands me some peanuts and an apple. “Muchísimas gracias”. I offer her some of my now-smashed peanut butter sandwich.

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A landscape in Zacapa.

10.34 am

We made it! The ROMP center is a free-standing building next to the public hospital, and after 6+ hours in a shuttle it is the best thing we have seen all morning. What’s even more exciting is what this building represents to my fellow passengers – a fresh start. We all spill out of the shuttle, enter the building, and collectively sigh as the ceiling fans push moving air toward our sweaty faces. Did I mention that Zacapa is hot?

The part-Guatemalan, part-American ROMP staff is still getting organized, so I take the liberty to explore the site. The main room (with the ceiling fans!) is well sized- housing metal runways with guardrails on either side, seats for waiting, and individual clinic rooms for consults. The rest of the building is the ROMP workshop, where their team customizes the prostheses. This is done with a massive pizza oven, a 3D printer, molding stations, and lots of people cutting, shaping, tinkering and improvising. For sheer temperature sake, Merida and I prefer the ceiling fan room to the one with the pizza oven, even though we both agree that the construction process is interesting and impressive.

This hot sheet of plastic, fresh out of the pizza oven will soon be Juan's prothesis.
This hot sheet of plastic, fresh out of the pizza oven will soon be Juan’s prothesis.
The ROMP team has to work fast, before the plastic cool.
The ROMP team has to work fast, before the plastic cools.

11.14 am

Don Juan is up! Our first patient of the day, Juan, has been fit with his lower leg prosthesis. Within minutes he is walking up and down the metal runway – walking on two legs for the first time in two years, since his right leg was amputated due to a complication of uncontrolled diabetes. As he walks, cheers are heard in all languages; Spanish, English, Kaqchikel, Q’anjob’al. A smile is permanently glued to his face, he announces “First walk, then salsa!” moving his hips back and forth and making his way towards the parking lot to test his skills on some hills and stairs.

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Juan dances a little salsa with ROMP CEO, David Krupa.
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Juan takes a walk, while the ROMP team analyzed his steps.

12.01 pm

19-year-old Sandra sits in a chair, starring wide-eyed towards the end of the metal runway in front of her, her porcelain skin lightly glimmers with sweat.

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“I’m nervous,” she says to me quietly. “What if I fall?”

“Then you will have to stand back up,” I say “and you have the bars to hold on to.”

She smiles timidly. Sandra has experienced a particularly hard road leading up to this point. A few years ago, doctors discovered a malignant tumor in her left leg, and had to amputate it up to her hip. She then underwent several cycles of chemotherapy. Against all odds, today she is here – cancer free and about to receive a new leg.

12.32 pm

Sandra’s prosthesis has been fit and she is walking! They say walking with a prosthetic leg requires 64% more energy than walking with two human legs. I believe it. I held her leg a few minutes ago, and it weighs a ton. Sandra struggled with the leg at first– unlike Juan whose prosthesis is below the knee, Sandra is learning how to use the knee joint, and that takes times. But she’s doing it!

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“I was so nervous to make this change… What if I fall, what if I can’t walk with it? Then there would be no hope for me, and that idea of no hope was scarier… Today I tried, and even though I know it will take work to get used to, I know I can do it. I am not as afraid anymore.”

2.00 pm

We all pause for lunch. The food of choice is pizza.

3.00 pm

2 ½ down, 4 ½ more to go and it is already 3 o’clock – goodness. I say ‘half’ because since we came back from lunch the ROMP team has focused their energy on Juana, a monolingual Q’anjob’al speaker from a remote village in northern Guatemala. With help from her interpreter, the team has been working to fit her prosthetic leg just right, and so far they are about halfway there.

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Juana with her 9-year-old and 1-year-old sons.

Juana was born with a rare congenital leg deformation. While most of today’s patients lost their limbs as a result of trauma or disease, Juana has never walked on two legs before. In fact, the state of her leg has also limited the use of her left arm, which constantly mobilizes a wooden crutch. She has been raising six children solo, since her husband died 18 months ago, while she was pregnant. She has been struggling to support her family with limited resources, and so three of her sons (the oldest of whom is 14) travel to larger cities to shine shoes during the week.

It is incredible that even through all this hardship, 40-year-old Juana is here today. The coordination within and between teams to get her to this point was enormous. It will all be worthwhile the moment she stands on two legs for the first time ever.

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Juana’s first step.

6.49 pm

Things are really picking up now. I think the ROMP team felt the pressure of being not even halfway through their caseload by dinnertime, and this really fueled the furnaces. It is time to focus on arms.

Maria is waiting for her new prosthetic arm to come back, yet again, from the molding workshop – they have been doing the back-and-forth of fitting and adjusting for over an hour. As we wait, she turns to me and says, “I feel like I have waited so long for this, and now it is finally going to happen. My life is going to change, again.”

Maria lost her arm two years ago in a factory accident – she was cleaning a machine with a rag when the rag was quickly sucked into the gears, pulling her unsuspecting arm in with it. The ROMP specialist walks over holding the prosthesis. “I think we got it right this time” he says, beaming. He slips the prosthesis over the sock on her arm and hooks up the back.

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7.15 pm

One more run back to the workshop and a few instructions later, and Maria has a new arm. She is a natural – by moving her left shoulder forward she can open the hook that is now her new right hand. By moving her right shoulder down she can lock her arm in place at a right angle or straight down by her side. She is picking up strips of paper, cups of water, and small metal bolts.

Her smile is infectious. “I am going to cry,” I tell her. “You can’t! Cause then we both will be crying,” she replies as a tear slips down her smiling cheek. This day has been so beautiful and it is not even over.

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8.43 pm

Gaspar is in awe as he stares down at his new arm. He used to be a bus driver – operating one of the large, colorful, and dangerously fast-moving camionetas, or ‘chicken buses’, as foreigners call them. But way before that, when he was a baby, a candle fell into his crib and burned his entire body. He was left with many scars, two fingers on his left hand, and a right arm ending at his wrist. Incredibly enough, Gaspar taught himself to drive a manual transmission, and traveled all over Guatemala as the commander of a giant blue bus.

“I got to see everything,” he told me earlier today, “the countryside, the cities – Xela, Guate, Huehue, everywhere.” He did that until a few years ago, when an infection in his right arm led doctors to amputate just below his elbow, thereby ending his driving career. As he looks down at his prosthetic, opening and closing his new metal hooks, he is silent. He notices me watching him and takes a phone out of his pocket.

“This is my wife.” he says motioning towards the background image of a women in traditional dress. After a moment, he looks at me, “I feel like I am a whole man again.”

One of the ROMP specialists walks over, and puts his hand on Gaspar’s shoulder. “How is it man?” he says in Spanish. Gaspar’s face breaks into a massive smile “So good. I can’t wait to get home and lift my boys into the air for the first time.” Gaspar has two kids, both under the age of 5.

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Gaspar practices opening and closing his new hook hand.

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9.19 pm

The ROMP director, David, lightly jogs towards me holding a beautiful silicon arm. “Check this out!” he says “The 3D printer just finished it up. It’s for Brenda.”

It is perfect in every way – the skin tone is soft and natural, there are artificial wrinkles at the finger joints, even the fingernails are sculpted to hand-model-standards of beauty.

Brenda idles over, hand-in-hand with her fiancé. “Is that one for me?” she asks me in a small, high-pitched voice. It sure is.

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Brenda’s fiancé said, “She is beautiful. She was before and she is now. For me her arm was never an issue, but for her I know this will make all the difference.”

Brenda was born without her left arm below the elbow. Doctors encouraged her parents to give her up for adoption, but they refused. They raised her to believe her arm was not a handicap, and as a result, it has not limited her. Brenda teaches elementary school, she is taking night classes to reach her dream of becoming a lawyer, and recently she even got her driver’s license.

“Even if I don’t judge myself, it would be nice to prevent others from judging me.” she tells me. She wants a prosthetic arm to avoid stigma when she starts to work in the judicial system.

“She’s amazing. She does things most women with two arms can’t or won’t do.” Her fiancé says to me while the team fits Brenda’s new silicon arm over the sock covering her own.

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10.09 pm

Leandro’s patience is about to pay off – he is the last attachment of the day and has waited years to receive a prosthesis.

He lost his arm while he was studying to become an airplane pilot. One day, on the way home from flight school, he was hit by a bus and dragged for a couple kilometers. When he woke up in the hospital a few days later, he felt as though his dream had been ripped from him. Impressively, he didn’t let the accident stop him. Now, a few years later, he is in nursing school, and wants a prosthetic arm to help him care for his patients.

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The ROMP team checks the fit of the what will be Leandro’s new arm.
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Leandro with CEO of ROMP, David Krupa.

The ROMP team makes the final adjustments and stands back. Leandro looks at his arm and beams. “How do you feel?” one of the specialists asks.

“This may be the most excited for the future I have been since I got accepted to flight school. I really have no words to express how I feel right now… just in shock, you know? “

10.48 pm

We pile into the van to start the six-hour ride home. Each prosthesis has been paid for and each patient has a giant, if not slightly tired, smile on their face.

Today has been a long but incredibly worthwhile day. After working in global health in Guatemala for over a year, I have grown accustom to incremental growth with a far-off trajectory, one that may or may not include success. However, ROMP has really figured something out. Although it took an enormous amount of coordination to bring these patients here today, the way their lives have been changed in less than 24 hours is profound – a type of instant gratification I have never seen in the medical field.

The concept seems rather simple – you could not walk, and now you can.

But how to explain the ripple effect of this change – the gravity of a single moment, for better or for worse, is actually quite difficult.

This morning seven people entered a building each missing a limb. Tonight we all walk out knowing that both they and their loved ones have a brighter future.

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Juan, Gaspar, Merida and Leandro at the end of the day.