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345 Our son, Aubrey, was diagnosed prenatally with a giant omphalocele and a ventriculoseptal defect in his heart. He was born full-term and lived for 158 days, all within the confines of the neonatal intensive care unit (NICU). His care shifted to exclusively comfort/palliative care in the last 2 weeks of his life. The one thing I can say is that even though I left without my son, my experience with the hospital and their staff is something that I will always treasure. In the midst of a horrible tragedy, his end-of-life care was done right. We were included in all decisions, treated with respect, considered part of the team, and retained a sense of control in an out-of-control situation. Extraordinary measures were taken for us to have the ending we desperately needed. The end of our son’s life was amazing and beautiful, all due to the diligence of a team that was willing to think outside the box. We were allowed to take Aubrey outside, removed from the sights and sounds of the NICU, to peacefully and lovingly say goodbye to him. The hospital is a place that holds tremendous memories for us, but in the end, that was his home. The staff was his family. They will forever remain in our hearts as having provided exemplary care for our amazing little boy. Palliative care in the perinatal period is distinct in that care is provided in a setting usually associated with the joy of welcoming a normal newborn into the family. The birth of a baby with a life-limiting condition or fetal or newborn death is in stark contrast to the expected outcome of a natural and “normal” pregnancy, labor, and delivery. Likewise, in the NICU, the reality that cure-directed treatment may fail to achieve its intended goal clashes with the expectation that cure is the norm and miracles happen every day. Perinatal palliative care goals can be applicable following the prenatal diagnosis Palliative Care in the Neonatal-Perinatal Period Suzanne S. Toce, M.D., Steven R. Leuthner, M.D., M.A., Deborah L. Dokken, M.P.A., Anita J. Catlin, D.N.Sc., F.N.P., Jennifer Brown, and Brian S. Carter, M.D. 13 346 special care environments and patient populations of a lethal fetal anomaly, after the diagnosis at birth of a neonatal lethal condition, or after the failure of cure-directed treatment to reverse severe medical problems. There are numerous opportunities for integrating palliative care concepts into care provided in the perinatal period. This will require attention to the questions addressed in this chapter: • What is the scope of the problem? • What are effective approaches to shared decision making so that the family’s goals, values, and preferences are incorporated into the care plan while acting in the newborn’s best interest, including minimizing suffering? • For which fetuses and infants should we consider palliative care goals as primary? • How can palliative care be implemented in the prenatal period? • How can pain, agitation, and other symptoms at the end of life be optimally managed for neonates? • Do existing models of care exemplify optimal neonatal palliative care? The Scope of the Problem Despite remarkable strides in neonatal survival, some newborns will inevitably die. Each year in the United States, there are almost 19,000 neonatal deaths (Kung et al., 2008) and more than 1 million fetal losses (Ventura, Abma, and Mosher, 2004); 9,000 additional deaths occur before the child’s first birthday, after a lifelong experience of chronic illness. As neonatal and perinatal practitioners will commonly manage severe illness and death, the need to be able to do so thoughtfully and effectively is clear. Regardless of the duration of the child’s life, parents want the child’s existence, individual importance, and familial relationships to be recognized and valued. When done well, perinatal palliative care accomplishes this goal. Applying hospice/palliative care concepts to neonatal care was first described in 1982 (Whitfield et al., 1982). More recently, with life-limiting diagnoses being discovered in utero, palliative care is also initiated prenatally. Clinicians practicing maternal-fetal medicine and neonatal intensive care can and should create an environment in which high tech and high touch coexist and complement each other (Marron-Corwin and Corwin, 2008). The integration of a palliative care philosophy into the care of families faced with a diagnosis of fetal anomaly or a sick newborn requires the expansion of the goals of care in...

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