A Call for Renewed Discussion on Plastic and Reconstructive Surgery in Children With Down Syndrome

The debate surrounding plastic and reconstructive surgery for children with Down syndrome has a complex history, gaining significant attention in Europe and the United States during the latter half of the 20th century. During this period, plastic surgeons advocated a “dual benefit” approach, believing it not only to help “normalize” a child’s appearance in the hopes of promoting greater social inclusion but also to improve health outcomes, such as enhancing speech and reducing respiratory issues.1 However, these claims faced significant pushback, with critics voicing ethical concerns and questioning the strength of the evidence backing such interventions.2 It was also highlighted that for children, especially those with Down syndrome, the ability to give truly informed consent could be challenging, mainly due to concerns about whether these patients fully understood the long-term implications of elective procedures partially intended to alter their appearance.3 These beliefs slowed research that included children and people with Down syndrome and further dissuaded plastic surgeons from performing much-needed functional operations. In addition, Down syndrome is a spectrum with some children presenting with minimal to no cognitive impairment and only requiring the willingness and availability of a qualified surgeon to provide the necessary services. After searching for opinion pieces and studies regarding plastic and reconstructive surgery for children with Down syndrome, we identified 38 publications—with only 1, providing a parental perspective, published post 2010.4 Although some gave strong views against its use,2 others expressed more favorable opinions, particularly those from parents, doctors, and peers.1,4 In addition, as the stigma around plastic and reconstructive surgery has continued to decrease, an increasing number of clinics have begun to advertise primarily aesthetic procedures to “normalize” facial features for adults with Down syndrome, warranting significant ethical considerations.5 Although the opinions of parents, doctors, and peers have traditionally shaped this debate,1,2,4 the voices of individuals with Down syndrome have been notably absent. This underscores a broader issue: decisions about any surgical intervention, reconstructive or otherwise, must prioritize the patient. In addition, it remains essential to recognize that altering physical appearance may not address all societal barriers, including those faced in the healthcare setting, where these individuals turn for help. Moreover, it is important to distinguish between plastic surgery procedures performed solely for cosmesis, and those with clear functional benefits, such as orthognathic surgery for treating sleep apnea. However, as with many plastic surgery interventions, the distinction often blurs when a procedure offers both functional improvements and perceived aesthetic benefits, as in the case of orthognathic surgery. We write this letter to urge renewed conversations focusing on including patients with Down syndrome in ethical discussions, and medical and surgical research, with a particular focus on appearance psychology. They should not face limitations in their access to medical or surgical interventions based on generalized assumptions but rather be provided with individualized care options that meet their specific needs. By placing the patient’s voice at the forefront and understanding that external influences, no matter how well intentioned, should not outweigh personal needs, we ensure that all decisions align with the patient’s unique values and preferences. In all cases, we must ask if the decision to perform or forgo an intervention is truly being performed for the benefit of the patient, or is it instead addressing the desires of the family, the expectations of society, or even the preferences, or lack thereof, of the surgeon? DISCLOSURE The authors have no financial interest to declare in relation to the content of this article.