Monday, March 21, 2011

Day 3

Today we finally got to meet the woman who brought us here to Guatemala, Dr. Marta Julia Ruiz. The day began with a tour of Population Council's headquarters in Antigua. To review, Population Council is the organization that sponsors Abriendo Oportunidades, a program that brings education and skills to young, Mayan girls. Dr. Ruiz is the inspiration for this project, having grown up in an indigenous community herself. Her passion is for improving the lives of Guatemalans by educating younger generations and expanding health care services.

We reviewed our agenda for the week, which includes visits to specialty clinics and hospitals all around the highlands. Dr. Ruiz shared with us some of her past experiences with genetic diagnoses. In particular, she recalled the difficulty with explaining the diagnosis of Down syndrome to a family. She did not feel that the  mother truly understood the cause of Down syndrome or the therapies needed for a special needs child. Dr. Ruiz feels that a genetic counselor is needed to communicate the message of the diagnosis from doctor to patient in Guatemala. She would also like us to educate doctors and midwives about the appropriate way to give bad news.

We further discussed the role of midwives in Guatemala, and the fact that 80% of deliveries are performed under the care of a midwife and not in a hospital. Most midwives enter into the profession as part of a family tradition and do not receive much formal training. Dr. Ruiz feels passionate about implementing guidelines for training midwives and incorporating their services into the health care system. This is the goal of the current ministry of health and a potential area of focus for GenetAssist on future trips.

We laid out the expectations for this trip and our ongoing collaboration. Dr. Ruiz has two main goals: 1) To prevent genetic disease through education, 2) To provide better services for those born with genetic conditions and birth defects.

Our fearless leader at Population Council headquarters
Our next meeting was at the office of Dr. Rodolfo E. Asensio. He is a surgeon at Centro Infantil De Estomatologia who focuses on cleft lip and palate repairs. He repairs roughly 40% of all cleft lips/palates in Guatemala. The surgery technique he uses was developed by his father 44 years ago, and has been named "Asensio". We discussed Dr. Asensio's interest in genetics and how he feels Guatemalans understand cleft lip/palate. We further explored how the cultural beliefs of the people inform this view. Dr. Asensio feels that cleft lip/palate is a major public health concern, affecting 1/600 births in Guatemala. There is a lack of support from the government for management of this birth defect.

The team with Dr. Asensio and Dr. Ruiz
Our day ended with a hike up Cerro de la Cruz with breathtaking views of Antigua.


Tomorrow we are going to Guatemala city to tour four hospitals, including one that specializes in cancer.

Hasta luego,

GenetAssist

3 comments:

  1. This all looks fabulous! Please report back after your visit to the cancer hospital - will post the link on the Cancer ListServe. Think many would be interested what you gals are doing, in the state of cancer treatment and in knowing what, if anything, they do for hereditary cancer families. Emjoy! Be safe!

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  2. >We laid out the expectations for this trip and our ongoing collaboration. Dr. Ruiz has two main goals: 1) To prevent genetic disease through education, 2) To provide better services for those born with genetic conditions and birth defects.

    These goals are interesting. There are a lot of questions I would love for you to consider addressing in future posts.

    Have you discussed with your collaborators the impact of the availability of abortion in Guatemala on the availability and use of prenatal screening/diagnostic procedures?

    What are the cultural norms that might impact genetic counseling services? Are the norms different for individuals who identify more closely with Mayan ethnicity over a Ladino ethnicity?

    What have you learned about the daily lives of individuals with disabilities?

    What opportunities do you think exist to expand genetic services in ways that reduce, not exacerbate, existing health disparities?

    How are you, as individuals, affected by the differences between the privilege you experience in Guatemala (e.g. your hotel, a translator, access to individuals with power) and the experiences of the majority of Guatemalans?

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