Day 6

Today we got off to an early start. We left Antigua at 7 am, in order to make it to our appointment in Solola at 10 am. Solola is a much more rural area than what we have been exposed to thus far. We met at Hospital Nacional Juande Dios Rodas Solola, with a team of health professionals that included, the executive director of the hospital, the associate director, a pediatrician, an obstetrician, and a social worker. It was a relatively informal round table chat, about the state of health care and genetics in the Solola region.  We explained our project and the genetic counseling profession and opened it up to a question and answer session. We learned a number of things from our discussion:

1. Patients present late to prenatal care, often in the 8^th or 9^th month, limiting options for treating a congenital condition
2. When a congenital or genetic condition is detected at birth (which is the most common scenario) patients are often lost to follow-up. Patients have no money for treatment and no transportation to get to appointments. There are also often many children at home, making it difficult to return for follow-up care
3. Pregnancy after the age of 35 is very common. In fact, many women have 3 or 4 more children after age 35
4. The organization of public health centers in Guatemala is as follows:

-       Reference Hospital (Various specialties)

-       Regional Hospital (General Hospital)

-       Permanent Health Centers (24 hour assistance)

-       Centros de Salud (Doctors and professional nurses only)

-       Puestos de Salud (Only nurses assistants, most accessible)

The prevalent disorders, according to these health professionals are: neural tube defects (NTDs), hydrocephalus, congenital hypothyroidism, Down syndrome, and trisomy 13

We also learned a lot about the cultural beliefs and norms of indigenous women in this region:

1. Young pregnancy is most often due to rape and incest. The medical director described a 10 year old pregnant girl as a “baby having a baby”
2.  Many women will not take prenatal vitamins or folic acid for fear of having too large a baby, and not being able to give birth naturally
3. Some believe karma is a cause of congenital conditions
4. Some couples believe congenital conditions are the result of having a baby out of wedlock, and will marry in order to prevent/heal a sick child

Their suggestions/recommendations were as follows:

1. Perform a 10-year retrospective study to identify births in which children were born with a genetic condition or birth defect, in order to identify the most prevalent conditions in the Solola region
2. Use the information gathered from the abovementioned study, in order to petition the government for support in order to establish a genetics clinic in Solola
3. Establish a genetics clinic with health professionals trained in genetics

The hospital

The team at Hospital Nacional Juande Dios Rodas Solola

After our meeting, we approached various patients inside/outside the hospital and asked them to complete a survey about genetics. Despite our efforts to translate our survey, many of them could not read or write in Spanish. Therefore our interpreter (Gladys) and Dr. Ruiz had to read each question aloud. We will discuss the results of these surveys in an upcoming post!

Gladys surveying a family

In the afternoon, we took a mental health break and visited Lake Atitlan. It was a beautiful day and the views were absolutely incredible! Between the three of us (Ny, Lindsey, and Gillian) we have about 5000 pictures of the trip, including the lake, that we will be sure to share with you later. 

Solola

Lake Atitlan

Lake Atitlan

Adios!

The GenetAssist Team