In a recent post, our genetic counselors shared stories of how patients impacted them during a session. Here are two more stories of our counselors’ memorable sessions:
A Two Word Profession: Genetic. Counselor.
In the many years that I have done genetic counseling, some of the most memorable moments have not been when I used my knowledge of genetics, but rather when I’ve focused in on the patient’s emotional needs. When first given a diagnosis, often patients go on an information quest, trying to answer the question “why”. I’ve learned that often we don’t have the answers as to what may be causing a particular abnormality or why a couple may be having difficulty getting or staying pregnant. While there are many patients and stories that I hold dear, there’s one that exemplifies the impact of what genetic counselors do.
A family came to see me after experiencing an unexpected loss at 19 weeks. The couple sat before me, full of sadness, disbelief, shock, and guilt. All they wanted to know was “why”. And after all the initial tests had been done, we were left with an unknown. I had no concrete answer for them– just a lot of maybes. This particular family reached out to me a few months after our initial visit and mentioned that while they were appreciative of the detailed workup to figure out “why”, the most powerful thing I had told them was that there was nothing they did or didn’t do that caused this to happen to their baby. To take the guilt away from them – helped with their healing and movement towards a normalcy that they once knew.
In today’s society, we have gotten accustomed to instant answers and when we don’t have an answer for the most challenging moments in our lives we are left feeling helpless and lost. Genetic counselors have a wealth of knowledge about genes, conditions, and how to deliver all this information. But to understand, listen, and to know when to give the patient the type of information they need in the moments they need it is the essence of what Genetic Counseling is.
A Safe Space
I had gotten a new case: advanced maternal age before 10 weeks of pregnancy and a family history of a cystic fibrosis carrier. She sat in front of me, told me how the ghosts of her addiction were chasing her and that they had found her. She was frightened about the effects her exposure had on the small peanut of a human inside of her. She told me she didn’t want to bring a child into this world that wouldn’t have the best fighting chance it could get. Despite everything going on for her, she was already a mother wanting what was best for her child. We talked for an hour and a half. As she left, she told me she would call me to let me know what she had decided – if she was going to keep the pregnancy or not. I didn’t hear from her again. My messages went unanswered and then I found out she had turned up at the detox unit of the hospital the weekend before. My heart broke for her. It turned out that she eventually terminated the pregnancy. I remember her thanking me as she walked out of my office, smiling in a way she hadn’t when she first came in. I remember her spilling her story and recognizing that I had created this safe space for her to be the woman that was pregnant and struggling with addiction. I still think of her, every so often, and wonder where she’s at and if her ghosts have come to back to haunt her. I hope not. I hope she’s found her happiness and that her peanut is still with her, even if only in her heart.