Critical care decisions in fetal and neonatal medicine: ethical issues
Living with disability
Introduction
7.1 In the preceding chapters, we have described the different stages at which critical care decisions may have to be made for fetuses or the newborn. The emphasis and structure of this chapter are different. We aim simply to provide an overview of the complex practical issues that often need to be dealt with when a child with known or predicted disabilities is finally able to leave hospital, up to early adulthood, irrespective of the cause of the disability. Caring for a child with disabilities is likely to entail the need for support from a variety of sources, including healthcare, social services and educational systems. Many children will be cared for at home, which can place additional demands on their parents and family. Our descriptions are general and we have not distinguished between disability arising as a consequence of critical care decisions and from other causes, except where we refer to studies on extremely premature or low birthweight babies. As before, we use hypothetical examples1 to illustrate issues which may arise. We go on to describe educational and social provision, to note some of the healthcare, educational and other costs involved and explain the legal background.
Footnotes1 These examples are representative of cases that occur in real life. We acknowledge that the choice of the issues that we discuss after each example may influence how the examples themselves are perceived by different readers, depending upon the reader’s own worldview.