Saturday, March 23, 2013

Day 7: Beach Day

We were lucky enough to have a day off today.  We drove two hours out of Antigua to Monterrico Beach and spent the day on black sand, under the blazing sun as huge waves crashed the shoreline.  It was a great way to spend our last day in Guatemala.

Friday, March 22, 2013

Day 6: Café Tacaño y Pan Dulce

Genetic counseling lesson number 47: be flexible. While today was not what we planned, it turned out to be a great one. We headed into the mist of the mountains towards Santa María de Jesús, a small village on the outskirts of Antigua. On the schedule for the day were conversations with pregnant women, medical students, and comadronas (midwives, you know this by now).

After being turned away from a private Puesto de Salud, we arrived at a courtyard alive with the day's market activities. Buried at the back of the marketplace lay the public Puesto de Salud, where we were to hold our meetings. We walked into a waiting room full of pregnant women, who looked at us as if we were from another planet, to which we have become accustomed. After getting the go-ahead from Rosa Elma, we began a short conversation with these women about pregnancy and folic acid (shocking, we know). They all reported that they have been taking folic acid throughout their pregnancies, but few knew that they should take it prior to future pregnancies.

We spoke with Gabriela, a young woman who is the education director for pregnant women at the puesto. She has recently spearheaded a "pregnancy club," where women can come freely ask questions and receive support. The club, which began this year, is growing steadily. In January, no one attended. February saw six attendees, and March saw 13. Gabriela has high hopes for the club's future. We marveled that the concerns of pregnant women are universal, whether they be in Midtown Manhattan or rural Guatemala.

We then hoped to have a conversation with medical students, but we were informed that after their morning's exam, they were making house calls. Each student had to see about 10 families, then return to Guatemala city.

To end the day, we met with a small focus group of local comadronas. We asked if they knew why they had been gathered to speak with us, but they said simply, "es una sorpresa." After explaining the purpose of our visit, we opened the floor for them to share their experiences with folic acid and birth defects. The comadronas were universally supportive of the use of folic acid during pregnancy, and reported that they had not seen a baby born with a serious birth defect in many years. They attributed this drop to an increased uptake of folic acid. Further, they echoed feedback from yesterday's students surrounding our educational materials, and were grateful for this resource.

To show our appreciation, we shared Café Tacaño y Pan Dulce (Stingy Coffee and Sweet Bread) as the skies opened up and the rain poured down on the tin roof of the puesto.

Wednesday, March 20, 2013

Day 5: Panqueques de Macadamia

Today started with the breakfast of champions: macadamia nut pancakes with blueberry jam and macadamia nut butter. Amazing! We returned to Valhalla, the macadamia nut farm we visited in 2011, to show Zoe (and Jose Luis) one of our favorite places in Guatemala. Once again, we received a warm welcome from Lorenzo and his wife, Emilia. They toured us around, explaining the positive impact macadamia nut farming can have on indigenous communities (check out their website).

Following our delicious start, we travelled to Guatemala City to reunite with the students from Abriendo Oportunidades (see Two Truths and a Lie post). We led a focus group consisting of 5 girls and 3 boys to talk about folic acid and get their opinions on the materials we had prepared. They educated us on their experience with folic acid. We learned that they can get folic acid from the clinic (puestos and centros de salud), but usually won't go to one, even if they are sick. Additionally, if it is handed out in the community, the purpose and benefits are not explained. Also, some women believe that taking any pills in a pregnancy is bad, and will cause birth defects or miscarriage. One girl suggested that to alleviate this concern, the folic acid should be offered in a different form, like a syrup.

They gave us the following feedback on our pamphlets:
  • We should write the specific age demographic that should be taking folic acid (10 years and up) instead of just saying it is good for all women 
  • We should include a photo of indigenous women of all ages, instead of just using a photo of a pregnant women. 
  • We should include a photo of a person with cleft lip, since they have seen this more often than spina bifida in their communities
  • The photo of the baby with spina bifida is hard to relate to, since the baby appears to be caucasian. This makes it seem like it is a condition that only affects 'white people'

Although they provided us with constructive feedback, they did think the pamphlet was beneficial. The students asked for more pamphlets and posters so they could pass them out to their family and friends at home. One of the boys commented that now they know this (spina bifida) is a real thing, and it is scary to them, they want to be sure that women in their communities know to take folic acid. Who knew that speaking with 8 young students would be the most influential meeting we've had thus far.

Day 4: San Martín

Today was a busy day for the GenetAssist team in Guatemala City.  We started the day with another impromptu presentation - this time in a pediatric clinic at Hospital San Juan de Dios.  Dr. Juan Carlos Reyes, a pediatrician, suggested that we speak to the group of women and children in the waiting room.  As the team handed out the pamphlets and hung posters, Zoë spoke about the benefits and importance of taking folic acid.  We repeated this process in the pediatric cancer waiting room.  A few of the women asked relevant follow-up questions and a man requested extra pamphlets to give to his sisters.  Since Dr. Graciela Mannucci's spina bifida clinic was at the same hospital, we hoped to reunite with her and visit her clinic.  Unfortunately, she was on vacation, so we left our resources for her to review.

After a quick coffee break at Restaurante San Martín, we went to meet Dr. Eddy René Gonzáles Flores at his new office.  We had met him during our first trip to Guatemala (see post), but he has taken on a new role as the medical director of Genómica: Centro de diagnóstico genético.  We felt that it was important to meet with him again to discuss the current status of cancer genetic services available in Guatemala.  Specifically, we wanted to know what types of screening and diagnostic services he offers, the costs of such services, and the logistics of a referral to his center for a consultation.  Lindsey currently follows a patient in New York who has been diagnosed with Familial Adenomatous Polyposis (FAP) Syndrome.  The patient's family members, who may also be at risk to have inherited this condition, live in Guatemala City.  We referred these family members to Dr. Gonzáles so that they could receive appropriate education and services.  This is an example of precisely the type of connections we hope to arrange in other countries in the future.

Next we returned to another branch of Restaurante San Martín (the Panera of Guatemala) where we met with Dr. Ludy Rodas, Director of the Reproductive Health Program at the Ministry of Health.  We showed her the resources we made for the folic acid health campaign in person.  She agreed to distribute the pamphlets and posters in the Ministry's health centers.  

Monday, March 18, 2013

Day 3: Under the Apple Tree

Today was our first day of official business. We reunited with our hero, Dr. Marta Julia Ruiz in the morning to discuss today's visit to The Institute of Basic Health in Chimaltenango. This is 1 of 54 training centers for community-based (or auxiliary) nurses in Guatemala. We met with the director, Doris J. Polanco Bran de Escobar to discuss her goal of implementing a genetics curriculum in her school. However, this was not the initial reason for our visit as we understood it. GenetAssist planned to speak to the nursing students about their experiences with folic acid and neural tube defects, and hand out our pamphlets. Lesson number 1 in genetic counseling: be flexible!

Doris shared her observations of increased rates of birth defects in rural Guatemalan communities. She suspects this is due to pregnant women being increasingly exposed to toxic fertilizers as they work in the fields to support their families (jobs traditionally done by men). Doris would like her students to be able to differentiate between birth defects due to teratogenic exposures and those that can be inherited. She asked us to create a pilot program for her school that can eventually be included in the national curriculum, which would be taught in all 54 schools. The goal of the genetics curriculum/pilot program is to teach nursing students to make appropriate referrals to genetic services, by identifying families at increased risk for genetic conditions.

At last we got to deliver the message about folic acid to 120 uniformed nursing students. This took the form of an impromptu lecture given by Zoe, assisted by Dr. Ruiz and Doris. Lesson number 2 in genetic counseling: be flexible! The GenetAssist team distributed the pamphlets, which Zoe used as a guide for her lecture. When the students were asked who in the room had taken folic acid, a group of young women raised their hands. They indicated that they had taken folic acid only during a previous pregnancy. So, our focus was on the importance of pre-conceptual folic acid. We also encouraged the students to use the pamphlets as an aid when instructing their future patients. Doris decided to make it a class project to create larger versions of the pamphlets in order to help them do so (in spite of the posters we had already given them).

Finally, we retired to Antigua where we ate pizza under an apple tree and debriefed about the events of the day with Dr. Ruiz. 

Day 2: Street Meat

Saturday, March 16, 2013

Day 1: Aperitivo

Hola Amigos!

The GenetAssist team has safely arrived in beautiful Antigua. After a long day of travel, the team is very happy to be reunited for the first time in a year! The city is busy preparing for yet another procession in celebration of Lent (see 'Purple Rain' post). We have a day off tomorrow for touring, followed by a busy schedule for the rest of the week. We look forward to sharing our adventures with you...stay tuned!!!

The GenetAssist Team

Our Hotel (better pictures to come)