Abstract
* Abbreviation: SNI — : severe neurologic impairment A couple presents to maternal fetal medicine clinic 3 days after a routine prenatal ultrasound at 19 weeks revealed a brain malformation consistent with severe holoprosencephaly in an otherwise normal appearing fetus. Clinicians share with the parents that many families decide to terminate their pregnancy in this situation on the basis of the likelihood that their child will have lifelong severe neurologic impairment (SNI) and require frequent hospital and medicalized home care. Without much further discussion, the couple immediately responds that they will continue their pregnancy. They express hope that their infant’s health will be better than doctors anticipate. Presenting at term in labor with brain abnormalities confirmed on ultrasound, the obstetric clinicians ask the parents about their goals of care. The couple again shares that they remain hopeful and that they would like every intervention done to help their child survive. The infant emerges lethargic and without respiratory effort requiring intubation in the delivery room and admission to the NICU. At the time of birth, the parents share that they are feeling a mix of surprise, anger, joy, and sadness. Over the subsequent months, the infant continues to show signs of SNI, grows well after a gastrostomy tube is placed, and remains intubated for intermittent apnea and airway obstruction. After discussions with the neonatology and surgery teams, the parents … Address correspondence to Jori F. Bogetz, MD, Seattle Children’s Research Institute, 1900 Ninth Ave, M/S: JMB-6, Seattle, WA 98101. E-mail: jori.bogetz{at}seattlechildrens.org
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