Researchers describe the prognosis for newborns with full trisomy 18 as poor; only approximately 10% survive to their first birthdays. Cause of death is usually related to complications due to central apnea and/or cardiac anomalies such as ventricular septal defect. Several recent studies described medical interventions for surviving newborns, including provision of supplemental oxygen, continuous positive airway pressure, and related mechanical ventilation. There needs to be further examination of the care received by newborns with full trisomy 18 during the prenatal, neonatal, and immediate perinatal periods. Professionals must be aware of possible medical complications as well as strategies to facilitate collaboration to ensure appropriate treatment decisions.
Simon was born on September 7, 2010 at 38 weeks gestation. He weighed 1,900 grams and presented with patent ductus arteriosus, ventricular septal defect, coarctation and a bilateral cleft lip. He was diagnosed at 3 days with trisomy 18 and lived 88.5 days in the Level III neonatal intensive care unit of a mid-sized hospital in the Midwest. Simon's team of care providers included neonatologists, a pediatric cardiologist, a pharmacist, nurses, and respiratory therapists. This group worked closely with Simon's parents to make treatment decisions (e.g., prostaglandins, insertion of a peripherally inserted central catheter) and manage daily care such as feeding and bathing. Most decisions were made collaboratively. When disagreements occurred, often due to his diagnosis, the majority of Simon's nurses honored his parents’ preferences. Nurses also provided support and information to Simon's parents and his older brothers (aged 7 and 5).
Initially, Simon was a candidate for heart surgery but respiratory complications delayed development of a plan until close to the time of his death. Apnea episodes became frequent and decisions were made to the optimal method of response. Simon's parents repeatedly voiced their objections to the types of interventions during apnea episodes. Several times, for example, Simon's father objected to having him “bagged” and preferred for Simon to “come back around.” They also advocated introducing tastes of breast milk, which Simon enjoyed. He also was fond of bath time with his brothers, and he communicated these emotions through gaze and facial expressions.
Simon's life offers implications for nursing practice including blending medical treatments and family-centered care in the face of a bleak diagnosis. There is a need for care that is professional and compassionate regardless of diagnosis.