Confusion and Strength
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PROFESSIONAL ISSUES
Confusion and Strength Elena Infante
Received: 21 April 2011 / Accepted: 16 November 2011 / Published online: 1 December 2011 # National Society of Genetic Counselors, Inc. 2011
Keywords Prenatal . Schizencephaly . Strength . Courage As a recent 2010 graduate who is new to the working genetic counseling world, I never realized how much the knowledge and experiences I accrued as a student would contribute to the unique and independent counselor I am now. I am currently employed as a cancer genetic counselor and research coordinator, but during my prenatal rotation as a student in the summer of 2009, I had a chance encounter with a patient that produced a defining moment in my career. That defining moment helped shape me into the caring professional I am today. B was a 16 year old African American girl who was pregnant with her first child and visiting the Fetal Diagnosis and Treatment Center. Her baby had been diagnosed based on a previous ultrasound with schizencephaly, a rare birth defect of the brain. She, her boyfriend, and her mother knew little about the condition and were coming to see the FDTC specialists to learn more about the implications for her baby. B was scheduled to see physicians in Maternal Fetal Medicine, Neonatology, and Neurology throughout the day, and unfortunately the information that the family received from each specialist differed, resulting in much confusion, sadness, and frustration for the family. Schizencephaly can be of varying severity, and B’s baby was diagnosed with the most severe form on ultrasound, with nearly no chance of a positive outcome in the baby.
E. Infante (*) Division of Gastroenterology, Hepatology, and Nutrition, University of Pittsburgh, Pittsburgh, PA, USA e-mail: [email protected]
However, in the first appointment the diagnosis was presented as if the baby still had a chance to have one of the less severe forms. Unfortunately, this was inaccurate as it had already been confirmed on follow up that the baby had the most severe form and this was not going to change. The family was told about possible long life span and high functioning mental capacity, which are not associated with the severe form of schizencephaly. After this appointment, the family was hopeful and optimistic about the baby. I was so anxious and sad for the family as I knew they would be crushed during the next appointment. As a student, I felt helpless. Minutes later, the neonatologist came in to the room and presented virtually opposite information. The neonatologist presented about little chance for survival, hospice care, and funeral arrangements; the family was shocked, horrified, and confused. B’s mother was very upset and heartbroken over this news, but B encouraged her openly to have hope. The family agreed during this appointment that they didn’t want the baby to live a meaningless and painful life, but it was already too late for B to terminate so they decided to make appropriate arrangements for hospice care and a memorial service. The last meeting scheduled was with th
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