Fertility Blog

Non-disclosing PGD

Several years ago I received a call that would change my life forever. My mother was diagnosed with Huntington's Disease, an inherited neuropsychiatric disease that affects mind and body - (imagine Parkinson's and Alzheimer's combined). The chances of passing on the disease are 50/50, and symptoms usually appear between ages 35 and 50. Because there is no cure, many "at risk" for the disease choose not to learn if they have inherited the HD gene. Living at risk with HD has altered my life completely. Every choice I make is influenced by the possibility I have inherited the HD gene. And no choice is more affected than that of bringing a child into the world. As I grappled with my mother's news, two facts became certain: I wanted children and I did not want to know if I would someday get HD. Given this, my husband and I sought advice on how to have a healthy baby. Our genetics counselor outlined two viable options: Once pregnant I could have a "non-disclosing" CVS that would indicate if the fetus had inherited the chromosome from either my mother or my father, thereby not revealing if I had HD. The second option was a cutting-edge process through IVF called pre-implantation genetic diagnosis (PGD). This involves testing each embryo for the HD gene at the cellular level when the blastocyst is only 5 days old. Only healthy embryos are implanted. After having experienced a failed pregnancy, CVS had no appeal. That left IVF/PGD. Yet in order to maintain my status as a non-disclosing patient, I arranged NOT to be told any details throughout the IVF cycle. Even knowing how many eggs were harvested or how many embryos were implanted; I could surmise my status. (Imagine: if none of the embryos were healthy, my doctors would stage a fake embryo transfer so I wouldn't suspect anything.) As such, it was important for all PFC doctors and staff not to reveal any information to me. Doing this meant putting total trust in everyone. Trying to get pregnant through IVF is a costly endeavor: emotionally, physically and financially. I believed it would be easy because I had gotten pregnant so quickly before. Consequently, I was devastated when our first two attempts failed. In retrospect, I am amazed at how my husband and I endured, despite days when I had almost given up all hope. After an exhausting six months and three attempts, I was finally pregnant. While overjoyed, I was still hesitant to believe it would go to term. Furthermore, I was required to have an amnio to ensure no errors were made, although given my non-disclosing status, I would not learn the results of that testing.

Posted on January 14th, 2004
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