The last half century has seen dramatic improvements in pediatric care with reduced mortality and prolonged survival of children with complex health conditions. Advances in neonatal care have improved survival rates of premature infants, infants with chronic lung disease, cardiac anomalies, birth defects, and genetic disorders.2,3  Medical treatments and surgical interventions have improved outcome and survival rates. More infants born with spina bifida and children with cystic fibrosis survive to adulthood.4,5  Medical equipment and technologic advances, gastrostomy tubes, and ventilator support have prolonged the lives of children and youth with neuromuscular disorders.

Although these advances indicate success in neonatal, medical, and surgical care, an almost unavoidable consequence is that some infants who would not have survived now live with significant physical and neurologic disorders. These disorders can include lifelong disabilities, declining health, and increasing medical fragility and complexity. Children and youth with...

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