Weinstein Lovell and Winters Pediatric Orthopaedics 7e

1530

CHAPTER 30  |  The Child with a Limb Deficiency

some limb deficiencies more than they dislike others (25–27). In addition, it is known that young adults show signs of anxi- ety when face-to-face with a person with a limb deficiency. However, there is some evidence that young children do not share their parents’ values toward various limb deficiencies when young, but between the ages of 6 and 18 years, they gradually develop values almost identical to those of their par- ents (26). This would suggest that these values may be sub- jected to modification among young children and emphasizes that organized discussions with classmates in school about the child’s handicap may be of great value. Despite the negative “first impression” that physical differ- ences hold for children, there is evidence demonstrating that the age of the patient, the gender, the degree of limb loss, or socioeconomic status are not predictors of low self-esteem or of depressive symptoms. Rather, social factors, for example, stress and hassle, parental discord, and social support from classmates, parents, and teachers, along with the child’s own perceptions of competency and adequacy, gained through peer acceptance, scholastic achievement, and athletic accomplishments, play the largest role in the development of self-esteem (28–30). The importance of this information for parents, physi- cians, therapists, prosthetists, and teachers is that although limb deficiency is the visible problem and is subject to little modification, the important factors in the development of ­self-esteem are independent of the deficiency and can be posi- tively affected. CARE COORDINATION The management of pediatric limb deficiency is best under- taken in a multidisciplinary specialized clinic. There are sev- eral reasons for this. First, limb deficiency is rare, and tertiary limb deficiency centers allow participating caregivers to gain the necessary experience to successfully treat these patients. It is beneficial to have these caregivers in the same place at the same time. This makes it convenient for the parents to receive their child’s care and can facilitate the efficient trans- fer of information, both between treating professionals and parents as well as among different treating professionals. Second, as previously mentioned, all patients and parents benefit by knowing they are not alone. They will benefit immensely by seeing and speaking to other parents and chil- dren like themselves. The team should be made up of a physician and surgeon, a prosthetist, a physical and occupational therapist, and a social worker or child psychologist, all of whom are knowledgeable in normal childhood development and who can anticipate the deviations that will occur in development. As compared to adult acquired amputees, who know what they had and what they want, the child and parents of a congenital amputee know little and need education and guidance that usually cannot be provided by an orthopaedic surgeon referring the patient to a prosthetist. The parents will be making decisions for their child with lifelong consequences, and they are acutely aware of

After parents have seen other children with limb defi- ciency, it is a good time to revisit their child’s diagnosis and medical treatment plan. By this stage, parents have a lot of information and notions of treatment, and they need guidance to place their child in the correct context of the information. The relationship between the parents and the physician (as well as all members of the team) is important. In this regard, the first thing the parents must be made to understand is that all the decisions will be theirs. Empowering well-informed par- ents to seek realistic treatment solutions for their child is an essential part of the treatment process. The physician’s role is to educate the parents through repetitive explanation and answer- ing parents’ questions to ensure they are indeed informed. It is often the other members of the care team, such as the therapist and prosthetist, that the parents will usually “hear” and retain more information from at this stage. Again, nothing helps like seeing other patients and parents. Finally, the physician should constantly reinforce that the child with a limb deficiency is more normal than abnormal. During this first year, the parents need to resolve their disap- pointment and loss, accept the child, and see the potential for the future. As part of that process, they need to bond with the child and begin to view the child as an independent per- son. Most parents will begin to see their children this way with growth and development. Again, this process is facilitated by seeing other children with similar problems. One recommen- dation that often needs repeating to the parents is that children tend to acquire the fears of their parents and that supporting any activity the child expresses interest in will allow the child to develop his or her natural abilities to the fullest. The Child.  The child with an amputation is essentially dif- ferent from other children. Although this is evident at birth in the case of congenital amputation, the child will not under- stand this difference until much later. Children’s understand- ing of their disability is general and incomplete at 6 years of age, but within a few years, around the age of 8 or 9 years, they come to a much more complete understanding of their handi- cap (23). Therefore, if parents have not discussed this with the child, they can expect the more difficult questions from their child to begin at around this age. All children with disabilities are vulnerable to social iso- lation. This, in turn, can have negative effects on the devel- opment of self-esteem, body image, and the child’s identity, which are developed through interaction with parents, teach- ers, friends, classmates, and others. As children develop these interactions, the issue of “first appearance” becomes important because it serves as a clue to perceived personal characteristics and can be an obstacle to further healthy interaction. Children in peer groups tend to devalue those with physical differences, a factor that may greatly interfere with these relationships (24). Parents especially understand this and fear for their child in this regard. There has been a great deal of study on the unaffected child's reaction to various limb deficiencies, showing that children prefer other unaffected children and that they dislike