Lauren Maynor

2 May 2019
Intern Mentor

For my primary research analysis I interviewed five different people all with unique

perspectives on Down syndrome and prenatal genetic testing. My hypothesis that doctors needed

to provide clearer and more concise information to mothers, so that they could make a better

decision about which test is best for them was supported. Every mother I interviewed

emphasized that they felt lost while discussing genetic testing options and thought that the

information was not explained to them in easy to understand terms. Also most of the mothers I

interviewed addressed the issue that doctors tried to pressure them to undergo certain test even

after that had expressed that they did not want to do genetic testings.

Amanda Higgs gave a point of view from the genetic counselor perspective. She

explained how she believes that testing is quite beneficial because it provides a pregnant woman

with the power of knowledge. Furthermore by knowing if ones child has or does not have Down

syndrome then a family can research relevant information; thus, when the baby arrives the family

is prepared and has an idea of what the best next steps are. Also she explained that what test is

“best” is unique to each mother because each mother has different wants and needs.

Susan Sarnecki is the mother of a 18 year old boy with Down syndrome. She talked

more about what she has learned from having a child with Down syndrome since it was so long

ago that she underwent genetic testing. Sarnecki emphasized that having Nathan, her son with

Down syndrome, changed her perspective much of life for the better. Also that most importantly

she loved Nathan just the way he is and could not imagine life without him.
 Sylvia Mendez provided me with information coming from a mother of a two year old

with Down syndrome. This interview was the most informative. She explained that after

learning her daughter would have Down syndrome that the doctors were rather rude and negative

when discussing the condition. From her personal experience she believes that there is a great

deal of work to be done to better the communication between a doctor and pregnant woman.

Finally she explained to me her testing options and what she chose to undergo and why.

Brooke Tapman is a mother of a young child who does not have Down syndrome. I

learned about the communication between a pregnant woman and a doctor. From her

explanation it became evident that if there was no signs detected for Down syndrome that the

doctors did not spend much time discussing the condition. In addition she stated that while she

was offered genetic testing that she opted not to undergo any.

Leigh Tapman who is currently pregnant discussed her check up appointments with the

doctors. She explained that as a young pregnant woman that the fear of having a child with

Down syndrome was not very strong, but that if her child does she would not terminate the

pregnancy after finding out. Also she stated that as of now no signs have pointed to Trisomy 21;

thus, her doctors have not heavily discusses the condition or the genetic testing for me

Overall all the interviews went great. I learned new information that was relevant and

useful when completing my final research projects. By talking to a doctor and mothers each with

such unique experiences I was able to gather a vast amount of information about a mother's

experience. Everyone concluded that the explanation of Down syndrome and the genetic testing

options could be better.