Editor’s note: The following patient essay was a finalist in Genome magazine’s inaugural Code Talker Award, honored at NSGC’s Annual Education Conference. The Code Talker Award was established to recognize the impact genetic counselors have on the health and lives of patients.
|Anna Victorine, MS, CGC
Las Vegas, Nevada
My name is Brooke Johns, and I was a patient of Anna Victorine in November 2014. I had learned that I was pregnant just before Halloween. I was already a mother of three, my youngest being 7 years old at the time.
To say it was an unexpected pregnancy was an understatement. Upon visiting my midwife and having her order an ultrasound to determine gestational age, we discovered that there were several fetal abnormalities. An appointment was made for me at Desert Perinatal Associates the following morning, where they confirmed that there was much wrong with my developing baby. There was not much that they could do to determine what exactly was wrong at that time; I had to wait until tests could be performed. I wish I had adequate words to convey to you my dark sense of grief and despair, knowing that something was seriously wrong with my baby, having no idea what was wrong, no idea what kind of future I was looking at, or how to prepare for that future. The only word that would suffice is “torture.”
On my first phone call with Anna [now with Provenance Healthcare], she explained to me who she was and what she did, and then went through the tests that were available to me that the doctor and I had discussed at my appointment. She even advocated for my desire to have a CVS (chorionic villus sampling) procedure done, even though the doctor wasn’t convinced it was necessary. She was on my side, and I felt as though I had someone who understood my very literal need for information and proactivity.
Anna received several calls from me over the following three weeks. Each time we spoke, she would not only answer my many questions pertaining to genetic disorders, but she would also offer comfort in the form of information and empathy. She was there in the room with supportive words and a memorable gift immediately after we found out that our baby’s heart had stopped beating. She also helped me mentally prepare for what the ensuing days of delivering my stillborn daughter would entail.
The difficult job of informing me of the test results (what exactly was wrong with our baby) was also hers. Her manner was so soft, and she asked permission before sharing any sensitive information with me. Since it was Christmastime, she offered me her cell phone number just in case I needed anything and found that the office was closed. I credit Anna with holding my head above water, allowing me to breath, during a very tumultuous time, when I could have easily drowned if left on my own. She was a necessary lifeline who greatly affected my life for good.
Since this experience, I have made the decision to return to school, and for the past year have been working on my prerequisite classes to apply to nursing school. Ultimately, I would love to enter genetic counseling to give to others what was given to me through Anna. Her work has inspired me to go and do likewise. The level of professionalism, compassion, empathy, and understanding that I experienced with Anna was so great that our angel baby, whom we never had the privilege of meeting, also bears her name.
Click here to read other winning Code Talker Award essays.