This week, a close friend who has struggled to become pregnant expressed her dilemma on deciding whether to do genetic testing on the baby she is carrying. She knows us well and Caily too and her concerns were not only about the low risk of miscarriage from an amniocentesis but also what she would do in the event of a positive testing for Down syndrome. Furthermore all the testing in the world does not identify so many issues including the most common developmental disorder autism.
Gavin and I have been drawn into these conversations many times since Caila was born. We have received calls from a family that gave birth to a kid with Down syndrome who did not want to keep the child. We have had Rabbis call us when a family has received diagnostic confirmation that they are carrying a baby with Down syndrome and they have to decide whether they will abort.
There is simply no easy answer and the answer cannot be “Caila is great, the Samuels family adore her and she is the light of our family and we could not imagine life without her so, no question, just go ahead and have the baby. ” While I have my own religious beliefs that inform my personal opinion my goal in these conversations is to help people make an informed choice not just a knee jerk reaction. I always say we live in a world of information overload yet most of us are uninformed. We read a diet fad started by a celebrity and become followers without checking out the published research, we listen to one sided media and let that inform our political opinions, we spend our lives in certain social, economic circles and assume we know everything about other people lives. The goal is to provide a broad view of the issues, medical problems, stresses, joys and accomplishments. I always then give the parents the blessing that they should get the clarity to make a decision that they are 100 percent comfortable with.
I certainly believe a person’s perspective is their reality. A few years ago I wrote a blog where I mentioned a conversation with a single friend where I was expressing my concern about Caily and her future – happiness, marriage etc. She responded “Jodi I am in my mid-thirties and unmarried. My mom has the same fears and I don’t have Down syndrome” So often this conversations plays in my head.
It was timely that I received this email from a fellow Upper West Side mom who has a kid the same age as Caily. She was the first mom with a Down syndrome child that I met after Caily was born and her article for the American Journal of Medical Genetics on how she feels about having her family observed by genetic counseling students in so many ways describes my thoughts on the issue.
An article likes this provides a message for everyone not just those choosing to genetic testing. It’s about making informed choices and seeing the big picture and it’s about having the courage to honestly question and think through issues.
Originally published: April 25, 2014