As with any personal interaction, the impact of genetic counseling is a two way street. As counselors, we strive to help our patients by providing information and support. But it is not unusual for a patient to affect their counselor. Below is the first of a two part series where some of our genetic counselors share stories of their memorable sessions.
Name Him George
As defined by The National Society of Genetic Counselors, “Genetic counseling is the process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease.” Thus it is akin to many other professions, be it bank teller, waitress or that person half a world away who is currently trying to talk you off a cliff of insanity as your internet is on the fritz again. Whether you refer to them as clients or patients, people are at the core of what we do.
I find it nearly impossible not to relate in some way to the majority of my patients, whether it is to their anxiety, their passion, or their sarcasm. I often refer to these patients as my pocket patients. The term is inspired by an episode of Bugs Bunny in which a rather large furry creature makes the declaration to Daffy Duck to “name him George and . . . hug him and pet him and squeeze him.” As HIPAA would undoubtedly have a few things to say about this, I have never actually pet, squeezed, or named a patient George, but they are the patients that I have an increased level of compassion for. They are the ones for which I feel an ache in my heart and wish I could protect from their own history of recurrent pregnancy losses, tragic family histories and unfavorable life situations.
The Student Becomes the Teacher
In my career as a genetic counselor, several of my patients have inspired me with the optimism and grace they have displayed in difficult circumstances. I once spoke with a couple who had been trying to conceive for several years with no success. They were young and healthy. A full infertility workup identified no cause. As part of their workup, they underwent carrier screening, which is indicated for anyone who is trying to conceive as a general screening measure. Their carrier screening indicated that they were both carriers for Cystic Fibrosis, a life-limiting autosomal recessive genetic condition. This meant any child they had would have a 25% chance to have Cystic Fibrosis. The couple was shocked, as they had no family history of this condition. However, I was touched by their positive outlook on their situation. They expressed to me that their difficulties with conceiving now felt like a blessing. Had they been able to conceive quickly, they might have unwittingly had a child with Cystic Fibrosis. The fact that they found out before conceiving allowed them to undergo in vitro fertilization and test embryos for the condition. A few months later, I assisted them in coordinating that testing.
They could easily have let the news of their carrier status crush them. They were having inexplicable difficulty having a child, and now there is a chance that any child they did have would be affected with a genetic condition. Many patients would see this as a sign that the fates are conspiring against them, and I wouldn’t blame them. But this couple instead decided to look for the silver lining. Occasionally as a genetic counselor you have the opportunity to learn from a patient, and that is one of the things that makes genetic counseling incredibly rewarding.
Stay tuned for more shares from our genetic counseling team!