Gregg Arianna R, Beltran-Regalado Bertha A, Montero Mackenzie L, Panda Roshan M, Cucalon Calderon Jose
Pediatrics, University of Nevada Reno School of Medicine, Reno, USA.
Cureus. 2024 Jul 28;16(7):e65581. doi: 10.7759/cureus.65581. eCollection 2024 Jul.
Vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula or atresia, renal anomalies, and limb abnormalities (VACTERL) association is a complex congenital condition characterized by the presence of malformations that affect various organ systems. Most children born with VACTERL association require surgery shortly after birth, often undergoing multiple procedures during infancy, which can lead to a wide range of physical challenges. The unique combination of malformations in these children in addition to having complex care needs that need to be met can result in physical and social difficulties in their daily lives, affecting both their own and their caregivers' quality of life. In some cases, children with complex medical needs are placed in foster care. When children with complex health needs enter the foster care system, there is a risk of overwhelming the caretaker, leading to their needs continuing to be unmet. Pediatricians have a role not only in helping support families but also in knowing what resources are available to meet these needs, which can be dependent on what their communities offer. Pediatricians require current training to navigate their state's foster care system. This training allows pediatricians to effectively collaborate with foster families while also assisting and coordinating complex care to support these families. We present a case of a child with complex health needs placed in the foster care system, facing multiple healthcare challenges, with care delayed due to difficulty attending appointments. Highlighted is the importance of delivering supportive, personalized, and multidisciplinary care to families with children who have complex health needs, including when caretakers are within the foster care system.
脊柱缺陷、肛门闭锁、心脏缺陷、气管食管瘘或闭锁、肾脏异常和肢体异常（VACTERL）综合征是一种复杂的先天性疾病，其特征是存在影响多个器官系统的畸形。大多数患有VACTERL综合征的儿童在出生后不久就需要手术，在婴儿期常常要接受多次手术，这可能导致各种各样的身体挑战。这些儿童畸形的独特组合，再加上有需要满足的复杂护理需求，可能会在他们的日常生活中导致身体和社交方面的困难，影响他们自己以及照顾者的生活质量。在某些情况下，有复杂医疗需求的儿童会被安置在寄养家庭。当有复杂健康需求的儿童进入寄养系统时，存在使照顾者不堪重负的风险，导致他们的需求持续得不到满足。儿科医生不仅在帮助支持家庭方面发挥作用，而且要了解有哪些可用资源来满足这些需求，这可能取决于他们所在社区提供的资源。儿科医生需要接受当前的培训，以便在其所在州的寄养系统中开展工作。这种培训使儿科医生能够有效地与寄养家庭合作，同时协助并协调复杂的护理工作以支持这些家庭。我们介绍了一个有复杂健康需求的儿童被安置在寄养系统中的案例，该儿童面临多种医疗挑战，由于难以按时就诊，护理工作被延误。强调了为有复杂健康需求儿童的家庭提供支持性、个性化和多学科护理的重要性，包括当照顾者来自寄养系统时。
