The surgical care of children with Trisomy 21 has evolved substantially over the last 50 years. In the 1970s, the nontreatment of associated gastrointestinal malformations was questioned. The nontreatment of esophageal atresia in a neonate with Trisomy 21 in the 1980s prompted federal regulation. Studies eventually showed that children with Trisomy 21 had comparable cardiac surgery outcomes to other children. Individuals and families successfully advocated for access to solid organ transplantation. Recently some states have passed legislation prohibiting discrimination on the basis of disability in organ transplantation. Many of these changes were the result of patient advocacy.
The nontreatment of children with Trisomy 13 and 18 has been questioned more recently. It has become clear that these conditions are not lethal or incompatible with life. Given the differences in prognosis and degree of disability between Trisomy 21 and Trisomy 13 and 18, some providers nonetheless question whether certain interventions, such as tracheostomy for long-term mechanical ventilation, G-tube placement, and Nissen fundoplication, are in these latter children’s best interest.
In this month’s Pediatrics Ethics Rounds, neonatologists, and an anesthesiologist, ethicist, and parent, discuss the care of an infant with Trisomy 18 who is unable to be weaned from ventilatory support after aortic valvuloplasty (10.1542/peds.2020-010686). In assessing their commentaries, it is particularly important to pay attention to the different goals or conceptions of benefit the commentators have. For example, some see an intervention that may prolong the patient’s life to nonetheless not be beneficial because it is unable to change the patient’s underlying neurologic impairment. I believe that it is generally preferable to rely on parents’ interpretation of their children’s quality of life. The greater deference afforded to surgeons and anesthesiologists, as compared to neonatologists, in offering or withholding interventions is interesting to me. What do you think?
