Day 7: Go Tell It on the Mountain

Our last full day today began at 6 a.m. Stephanie led the team on a three hour voyage to Solola to carry out her capstone project. In addition to our usual guide, Lorena, we were joined by José Luis, driver/bodyguard extraordinaire. We were a little green from the winding mountain roads when we arrived in Solola, a rural town quite different from Antigua. It was market day, and the city was alive with activity including men in traditional garb and women carrying live, flapping chickens.

After a couple of wrong turns, we found the restaurant where we were to meet the comadronas (midwives). Upstairs, thirteen midwives awaited our arrival. The meeting started with a lively discussion around the consent forms, created to protect their anonymity and allow our discussion to be recorded (those who could not write consented with their thumbprints).  We were surprised to learn that the midwives actually wanted their names recorded alongside their stories, in both Stephanie's capstone and this blog, to receive proper credit for their knowledge and wisdom.

After a brief description of GenetAssist, we opened the floor to the midwives. They were eager to discuss their organization and the current obstacles they face. We learned that the national association of midwives has representation from only five departments: Chimaltenango, Solola, Quetzaltenango, El Quiche, and Coban. Guatemala's remaining 17 departments go unrepresented at this time for financial reasons. They have been working with the Ministry of Health for the past two years to accomplish two main goals. One is to create a contract with the Ministry so that they can receive a stipend. The second goal is to designate a national comadrona day to celebrate the work of midwives and to dignify their profession. Interestingly, there is already such a day marked on the Mayan calendar.

The women passionately expressed their frustration with the health centers and the professionals working at them. They are trained to take certain high-risk pregnancies to hospitals. However, when they arrive, they are often dismissed, blamed for complications, and marginalized. According to them, some doctors will refuse to treat a woman if a comadrona is nearby. In some situations, they have been asked to complete janitorial tasks instead of assisting with the birth. For these reasons and others, many comadronas are hesitant to bring patients to hospitals. Patients also resist going due to language barriers and maltreatment.

Next, each woman had the opportunity to tell how she came to be a comadrona and to share a memorable experience from her years of practice. Rosa García's mother explained to her that being a comadrona was her calling, and a gift from God. She resisted, and went on to have seven children. After she had been sick for three months with no improvement in sight, she accepted her calling as a midwife and has been healthy since.

Rosa Garcia

María Cecilia described that comadronas are called-upon at all hours of the night to assist in childbirth. One night, when traveling to a distant location to deliver a baby, she was robbed alongside the road. When she arrived at her destination, she discovered that the husband of the woman giving birth was actually the man who robbed her. It is tradition for the husband to accompany the midwife home after a birth. María Cecilia declined.

Maria Cecilia

With all these difficulties that they shared with us, we asked what motivates them to keep doing their job. They clarified that being a midwife is not a job, but a destiny.

GenetAssist with: Magdalena, Febe, Dalila, Heleen, Micaela, Martina, Maria Cecilia, Rafaela, Vicenta, Rosa Garcia, Marta, Marilena and Angelina

Day 6: Two Truths and a Lie

Today was Zoe's day - a year in the making! We walked to the community center in Antigua, only a few blocks from our hotel, where the activities of Abriendo Oportunidades take place. The guard at the gate had absolutely no clue who we were, or who we were looking for. After finally making it inside, we found Alejandra Munguia, director of activities for the program. With a roller suitcase filled with educational materials, Zoe and the team entered a classroom of 34 girls (ages 16-22) and program organizers to begin the day's activities.

Zoe's bag o' tricks

To break the ice we played "two truths and a lie." Each of us introduced ourselves and stated 3 "facts." The girls then guessed which of the 3 statements was a lie. After hearing from the team, each girl introduced herself and took a turn at the game. Some were obvious like, "I have 3 feet," or "I have 79 grandchildren." Others were more difficult to guess. Many statements were met with giggles and the girls remained interactive throughout!

Then we got down to business. Zoe began by distributing a pre-quiz. Many of the girls struggled to understand the questions, as Spanish is their second language and many of the vocabulary words were new. In a typical genetic counseling fashion, Zoe then "contracted" with the girls, explaining what genetic counselors do in the United States and what we hope to do in Guatemala. She distributed workbooks that she made and the lesson on basic genetics began.

Maestra Zoe

At first, the girls seemed quiet as they tried to sort through this foreign information, but quickly warmed up to Zoe's teaching style and started asking relevant questions. They particularly enjoyed an activity in which they were asked to think about some of their own traits and whether these traits came from their mother or father. They were eager to share their responses with the class! GenetAssist also chimed in and we learned that Gillian's freckles came from her mom.

We were pleasantly surprised by the number of interesting questions that followed. With a level of flexibility that any good GC can muster, we threw the agenda out the window and let the students determine the direction of the lesson. We covered many important topics, including chromosomal anomalies (e.g. Down syndrome), midline defects, and the role of folic acid.

The girls took to the post-quiz activity with great enthusiasm. It was clear that the lesson made an impact on both the girls and the GenetAssist team.

Explaining Multifactorial Traits

Day 5: Ode to Joy

Hola amigos,

Our journey took us to Chimaltenango today to visit an orphanage and school for children with special needs, called Los Gozosos (Joy-filled homes). You can check out their website at: http://losgozosos.org. This organization was created 9 years ago to provide a forever-home for children with disabilities and help them reach their full potential. They are a Christian based organization funded entirely by donations. Los Gozosos is the only orphanage in Chimaltenango that accepts children with disabilities. Today we had the opportunity to sit with 10 children with special needs and 6 of their nannies/therapists to learn more about their history, and to answer any questions they had for us.

First we learned all about their daily activities, including their school program, which involves occupational therapy and physical therapy. We also learned about each child's story and where they came from. The children were extremely sweet and friendly - as soon as they saw us they ran into our laps and admired our clothes and accessories.

After learning about the children and their daily lives, we described our profession and asked if the therapists had any questions for us. At first we heard crickets, and they suggested we come back and educate the parents of these children on the different syndromes. However, when asked if they were interested in learning about some of these syndromes themselves, they were eager to hear more and the questions started flowing. Zoe explained the genetics of Down Syndrome and Fragile X as well as the role of folic acid in preventing midline defects, including cleft lip and palate (which seemed to be a significant concern). Many of the therapists were very interested in learning about folic acid, especially why they should be taking it and when to start. One therapist in particular mentioned a disagreement she was having with her sisters. She had been taking a multivitamin that contained folic acid, even though she was not yet married or in a relationship. Her sisters told her that she didn't need to take folic acid until she was married. She told us that she is now eager to take the new information back to her sisters to prove them wrong and to convince them to start taking folic acid themselves. Success!

Helen is skeptical of Zoe's description of Down Syndrome

We came out of the meeting feeling that things went really well. Once again, folic acid became the focus of the conversation; another indication that information is available, but awareness is lacking. The overall impression we got from Los Gozosos was that these children are extremely loved and well taken care of. We all agreed that the experience was a meaningful one and we were glad we went!

GenetAssist with the Los Gozosos children and therapists

More Pictures!

Lindsey and Gladys making tortillas

Parade

Zoe playing the marimba

Gillian and Gladys making tortillas

Crowd at the parade

Watching the parade

Little ducklings

Church in the Parque Central in Antigua

At the top of Pacaya (the volcano)

A selection of Guatemalan corn 

Assembling peanut butter and banana sandwiches on top of Pacaya

Day 4: Ministry of Health

Buenas noches,

We had a very productive and thought-provoking day today! We drove to Guatemala City and met with Dr. Miriam Bethancourt, the current director and Dr. Antonio Petzey, the incoming director of Reproductive Health at the Ministry of Health. The first portion of our meeting focused around Miriam telling us about the current guidelines for folic acid standardization and distribution. She informed us that currently they recommend 5 mg of folic acid once per week during pregnancy. There are 2 ways that women can get folic acid:

1. Directly from the Ministry of Health, free of charge 
2. Through pharmacies, no prescription needed

She also stated that although not in the Ministry guidelines, they do recommend that physicians tell women of reproductive age to take folic acid 3 months before pregnancy.

Since this is all consistent with international guidelines, we asked her why she thought the prevalence of neural tube defects remained so high. She stated a number of reasons:

1. Women are skeptical of free medication
2. They do not know of folic acid or its benefits and therefore, they do not know to go and ask for it
3. Women present late, if at all, to prenatal care and have not been taking folic acid

To combat malnutrition (maternal malnutrition included) in Guatemala, the Ministry has partnered with an organization called Prosan. We met today with Ivette Lemus, a head honcho of this organization. Prosan sets the guidelines for how the Ministry should distribute folic acid, iron, and micronutrient 'sprinkles'. Their program, the Program of Nutritional Health, will be starting in April. This program is focused on 83 towns/villages that have the highest rate of malnutrition and poverty in the country. They aim to give children micronutrient sprinkles every 6 months for the first five years of life. For females aged 10-49, they plan to give 60 mg of iron and 5 mg of folic acid per week, if not pregnant. If pregnant, women will get 120 mg of iron and 5 mg of folic per week. To evaluate the effectiveness of the program, they plan to record the height and weight of children until age five years. 

It seemed to us that all of the pieces to reduce the incidence of neural tube defects are in place, however, the people are not aware of them. Miriam suggested that one way to inform Guatemalan women about folic acid would be through a national advertising campaign. We immediately loved this idea. We discussed this for a while to figure out what mediums would be most effective. Pamphlets seemed to be the most practical option as they can reach the largest number of people. There were many organizations mentioned that would be able to assist in distributing these pamphlets to villages around the country. We also discussed including the pamphlets with folic acid packets so women can learn about what they are taking. Pamphlets would be in Spanish, but translated into the 3 most common indigenous languages. They also would be mostly pictures, as many cannot read (in any language). The ministry is going to collaborate with us to create this pamphlet. Isn't this great?! We're so excited to get started :)

GenetAssist with Dr. Bethancourt, Dr. Petzey and Dr. Ruiz

GenetAssist with Ivette and Dr. Ruiz

Day 3: Scale Up

Hi All,

GenetAssist is tired - we are writing to you just before bed. We had an incredibly interesting day today. We ate peanut butter and banana sandwiches (ingredients purchased from the local Walmart) on top of an active volcano. The climb was long and difficult, but worth it once we got to the top-ish. The first 10 minutes were the worst because we did not know it was going to be so steep. It took about 2 hours, with many rest stops in between. Our tour guide Freddy (who calls himself Freddy Krueger) pointed out landmarks and vegetation along the way. Our favorites were the "cheese leaves" that we used as towels to wipe sweat when we were only 1/4 of the way up. Freddy was very patient.

When we reached the top (or what we thought was the top) we found the highest store in Guatemala. The owner sold jewelry made from volcanic ash from the last eruption in 2010. The proceeds go to families affected by that eruption to help rebuild their homes.

Lava Store

After shopping we stopped to make our lunch. This gave us the fuel to keep climbing to the actual top. We found ourselves in the middle of a crater where the holes in the ground blew hot air like a radiator. Freddy also picked out lava stones for each of us to take home. Next, he tried to persuade us to keep hiking with the promise of marshmallows roasted over the volcanic heat. At this point, GenetAssist declined.

GenetAssist with Lorena, our new interpreter

On "Pride Rock"

After long overdue showers and naps, we met Dr. Ruiz for dinner to discuss our plan for the week. She shared with us her expanding role in women and children's health issues, serving as a consultant to OSAR (Observatorio En Salud Reproductiva) Observatory. She wants to "scale up" the Abriendo Oportunidades model, by applying it to other programs within Guatemala. We will see Dr. Ruiz again in the morning to work on a project we will detail in tomorrow's blog.

Here are some more hiking pictures:

Toward the bottom - still happy campers

Freddy

Day 2: Purple Rain

Buenas noches,

First, lets talk about our breakfast. We sat at a lovely table in the sunshine outside of Lindsey and Gillian’s room, and ate fresh fruit, eggs, beans, cheese, bread, and drank freshly squeezed OJ. Jealous? We’ve been spoiled so far.

Next, we ventured out to the streets of Antigua to take in parade day. Amidst a sea of PURPLE robes and banners lining the streets, were ‘carpets’ under construction.

Creating a carpet

A finished carpet 

These ‘carpets’ are made of sawdust mixed with paint and leaves/flowers. The designs are created using stencils and are painstakingly detailed. We watched in awe as locals blanketed the parade route in these intricate creations. We were dismayed when we learned that the carpets are trampled and destroyed as Jesus is carried through the streets on a litter.

We staked out a good spot to sit and watch the procession amongst some Guatemalan ruins. When the parade came through, the streets were filled with smoke from incense and ominous dirge-like music. Then Jesus appeared on a litter carried by 80 men dressed in purple. Next came Mary, also on a litter, this time carried by women dressed in black. Once Mary was right in front of us, the skies opened and it began to RAIN. They quickly had to put Mary down, remove her crown, and place a tarp over the litter.

Litter being carried by men in purple

Litter with Mary

Mary with tarp

We spent the next 15 minutes navigating through the rain and parade-goers to get back to our hotel, only to find it locked with no one home. Joseph the doorman was busy watching the history channel. You can’t make this stuff up.

Here are some other pictures from throughout the day:

Market

Zoe looking at scarves

Stencil for a carpet

Zoe and Steph - our newest team members! 

Parade

Parade