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CHAPTER 30
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The Child with a Limb Deficiency
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
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
