16 Baby CareLink : Collaborative Tools to Support Families

sion making and communication between providers, patients, and their families will play an important role in supporting the relationship between patient and provider and will assist patients to better understand their illness experience and how their own values affect decision making [1–8].We call this tight integration of software and people in health care Collaborative Healthware [9–11]. Baby CareLink, an application of Collaborative Healthware, links NICU staff with families of medically complex newborns [12]. Using a Web browser, parents can receive daily updates and track information about their baby’s health, see recent pictures of their baby, communicate with NICU staff, access a personalized knowledge base for newborn care, and provide feedback regarding the care process. Following discharge, Baby CareLink can be used to support care coordination, follow-up monitoring, and ongoing communication with parents. Baby CareLink is Collaborative Healthware that supports the relationship between parents and healthcare provider by engaging the family as full partners in the healthcare process. The birth of a child is a great joy for most families, but for families whose children require care in the Neonatal Intensive Care Unit (NICU) it is a time of great emotional distress. The care of premature infants is truly a miracle of modern medicine. Incubators for premature infants were developed in the 1930s and supported a controlled environment for the infant. For the most part, the prematurity of the lung was the limiting factor to survivability of the infant. Surfactant is a naturally occurring substance produced by the lung to decrease the surface tension in these small air sacks. Only more mature lungs produce this substance. Even modern ventilators with small rapid tidal volumes had problems expanding the small air exchanging units in the lung called alveoli until the 1970s when surfactant was introduced. As doctors attempted to resuscitate smaller and smaller infants, their success rate improved. Concomitant with the introduction of improved ventilation technology was a dramatic improvement in fertility technologies. Pharmaceuticals were developed to help stimulate ovulation and support tenuous pregnancies. Women were also able to receive already fertilized eggs to overcome biological barriers to conception. The result of these advances has been that preterm birth rate has increased 9% since 1990 and 23% since 1981. 16 Baby CareLink: Collaborative Tools to Support Families*