“Nothing you did or didn’t do caused this to happen.” 

I imagine all of us learned some version of this phrase in our Introduction to Genetic Counseling coursework in graduate school. This statement was a staple in my genetic counseling sessions, often incorporated in every single conversation I had with patients. It felt as though that single sentence could erase all manner of concerns in one fell swoop. Nothing you did caused this diagnosis. Nothing you didn’t do caused this diagnosis. It is simply a random chance. All patient concerns assuaged. 

Then, I found myself on the receiving end of this statement. I was 24w6d pregnant with my second child. Two days prior, what we thought would simply be a growth scan revealed a complex left-sided heart defect not identified on the anatomy scan four weeks before. There had been a flurry of emails and pulling strings to obtain the first available fetal echo appointment. Late on a Friday afternoon, in a dimly lit consult room, we were informed that our son had Shone’s-like complex, and would require some form of intervention at some point in infancy. 

And then, the pediatric cardiologist hit me with, “Nothing you did or didn’t do caused this to happen.” 

I have a visceral memory of this moment. That phrase that I had heavily used with my own patients, that I truly believed was helping, felt completely hollow when I was on the receiving end. It did not provide comfort, and it certainly did not assuage the deep guilt and pain I felt in that moment.

What followed was 14 weeks of uncertainty, with each fetal echo both providing more and less clarity on what the future held. I was not thriving in my professional responsibilities during this time, especially the clinical ones. I struggled to empathize with my patients. My counseling was robotic —I was simply trying to survive from one minute to the next. 

After my son’s birth, his corrective open heart surgery at five weeks old, and an extended (unpaid) parental leave, I returned to work as a person and genetic counselor I didn’t recognize, unsure if I’d ever want to counsel patients again. 

Slowly, but surely, with a lot of therapy and support, my desire to provide clinical care returned. I went back to the basics of psychosocial counseling skills and immersed myself in the psychology behind our profession. Weil’s “Psychosocial Genetic Counseling,” Veach et al.’s “Facilitating the Genetic Counseling Process” and LeRoy et al.’s “Genetic Counseling Practice” took up semipermanent residence on my desk. Now that I was 11 years out of grad school, the pages of these books were filled with faded yellow highlighter, a reminder of the things my younger self thought were important. When I finished rereading those, I treated myself to Beisecker et al.’s “Advanced Genetic Counseling” and a new pack of highlighters.

I also looked to outside texts, and found both comfort and guidance in the writings of theologian and cancer survivor Kate Bowler. I came to understand that competing and opposite emotions could coexist in the same space and in the same situation. I began the slow, difficult process of untangling the trauma and grief surrounding my son’s diagnosis, and became more familiar with the person, wife, mother, daughter, sister, friend and genetic counselor I had become.

I refuse to employ toxic positivity as I look back on that tumultuous time in our lives, but I can see now that I am a better genetic counselor because of it. I learned that sometimes the most helpful thing can be to simply sit in the uncertainty and pain with a patient. Silence truly is one of the most powerful tools in our psychosocial toolboxes. I learned that a patient declining genetic testing isn’t a failure on my part, and that there are so many complicated factors that go into that decision. I learned that some of the basic psychosocial phrases I had relied on in the past perhaps weren’t as impactful as I had once believed. 

One of the first patients I counseled after returning to clinical care was a young woman who had recently been diagnosed with breast cancer. During our initial conversation, she expressed that she needed to do genetic testing for her peace of mind. When I disclosed her negative results a few weeks later, she stated, “So, it was me who caused my breast cancer.” I paused, fighting my initial inclination to use my formerly beloved phrase. I remembered the pain that phrase had caused me when I was the patient. Instead, I asked questions, I employed silence, I sat in that painful moment with my patient, and I deepened the rapport between the two of us. And then, only when I felt that the patient was ready to hear it, did I tell her, “None of this was caused by your actions. None of this is your fault. You may not believe it today or tomorrow or next week or even next year, or maybe even ever. But you need to hear it anyway.”

Photo by Solen Feyissa on Unsplash

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