Dr. Coulter or an immediate family member serves as a board member, owner, officer, or committee member of Association of Children’s Prosthetic and Orthotic Clinics. Neither Dr. Cannoy nor any immediate family member has received anything of value from or has stock or stock options held in a commercial company or institution related directly or indirectly to the subject of this chapter.
ABSTRACT
Children with congenital and acquired limb deficiencies receive the best quality care when a multidisciplinary team specializing in pediatrics evaluates the child, provides appropriate interventions, and recognizes the challenges in working with this patient cohort. Using knowledge of growth, sensorimotor and cognitive development, and orthopaedics, pediatric physical therapists play an integral role in the team treating children with limb loss and limb differences. The physical therapist often serves as a liaison between the family and other team members and promotes family-centered care that focuses on the child’s function and participation in the home and the community.
The World Health Organization (WHO) recognizes that children experience rapid growth and substantial changes in physical, social, and psychological development during their first 2 decades of life, and that a child’s development depends on and is influenced by factors in the child’s environment as well as the wishes, beliefs, and actions of parents and caregivers.1 In addition, children experience the intensity and effects of disability and health-related conditions differently from adults.1 The Children and Youth Version of the World Health Organization’s International Classification of Functioning, Disability and Health (ICF-CY) uses terminology that classifies these challenges and problems in the following areas: body structures and function, activity limitations, and participation. Healthcare clinicians use the ICF-CY framework and terminology to document and measure healthrelated issues and design interventions for their young patients that include both the child and their family.
Within the construct of the ICF-CY, surgeons, orthotists, prosthetists, and therapists that treat children are very aware of and confident with identifying, measuring, and treating impairments of body structure and function, such as limb differences, the physiologic effects of trauma and disease, limitations to joint range of motion, vital signs, and pain. Although such limitations of body structures and function need to be addressed, these are best accomplished with goals that consider and optimize a child’s developmental age, function, and family’s beliefs and wishes, and engage the child within their family, school, and community environments. The ultimate goal of pediatric rehabilitation is for children to participate in activities with their families and within their schools and communities.
Children with limb loss and limb differences have benefited from increased societal awareness and acceptance of individuals with limb loss. Commonly featured in social media and TV advertisements are stories of wounded warriors, Paralympic athletes, and children who wear prostheses. An unfortunate consequence of war has been the increased number of wounded soldiers who are seeking rehabilitation and prostheses that enable them to resume function beyond what was previously imagined. Similarly, children with amputations and limb differences continue to challenge their capabilities by participating in camps, school and community events, and competing in sports with their peers.
Manufacturers have assisted in meeting these demands by developing various pediatric prosthetic components, such as running feet for children2,3 and adaptive feet for rock wall climbing and cycling.4 In addition, developments in pediatric suspension systems now allow children to wear prostheses without the need for suspension belts. However, a persistent major gap remains in the development of pediatric prosthetic knee technology that will keep up with the ever-growing demands and wear and tear placed on prosthetic components during a child’s everyday activities and play.
By providing surgical options besides amputation, advances in surgical reconstruction and limb salvage techniques continue to influence the decisions of families of children in whom bone tumors are diagnosed.5,6 Even children diagnosed with congenital longitudinal deficiencies of the femur, tibia, and fibula are benefiting from these surgical innovations.7,8 Physical therapists and prosthetists should be aware of these advances to fully understand the options available to each family as they make difficult decisions for their patients.
In pediatric patients with acquired limb loss, the physical therapist’s role is well defined. The primary goal is to restore both children and adolescents to the function they possessed before the trauma or surgery that precipitated the amputation. This restoration is initially done through wound care, edema control, shaping of the residual limb, preserving range of motion, and strengthening and functional exercises.
For children with congenital limb loss, the physical therapy goals and management strategies are different. These children naturally develop abilities to perform age-appropriate activities by incorporating the impaired limbs into their movement stratgies.9,10 Because children with congenital limb loss do not know any differently, learning to move with a deficient limb is normal for them as they automatically integrate their affected limbs into their motor, sensory, and cognitive development. Regardless of the type of deficiency, the size, shape, strength, and flexibility of the deficient limb provides both sensory and motor input that guides the child’s motor development. Even infants and toddlers with moderate to severe lower limb deformities will attempt to pull to stand and cruise if they have intact neurologic development. Accordingly, the physical therapist needs to be knowledgeable in all areas of gross motor, fine motor, and cognitive development and be able to anticipate the limitations that may be caused by a limb deficiency.9,10 The physical therapist should also be aware of current pediatric prosthetic technologies and surgical options available for the different classifications of limb deficiencies.
In children with congenital limb deficiencies, the physical therapist often acts as an advocate, teacher, and mentor to the child and their family, anticipating immediate and future functional challenges. In centers specializing in pediatric limb deficiencies, the physical therapist frequently acts as a liaison between the family and other team members, empowering the parents to be the primary providers of care and promoting family-centered care.9
Early and ongoing education is imperative to educate and empower the child and family about possible surgical, prosthetic, and therapy options. Regardless of whether the child is born with a limb difference or sustained a limb loss resulting from illness or trauma, education is crucial for understanding of the child’s condition and available treatment options. Many factors determine the education provided to child and family that include: the severity of the child’s limb deficiency; associated medical and/or neurologic impairments, involvement of multiple limbs; the child’s age; and the family’s beliefs and wishes. The distance the family lives from the center and their ability to actively participate in their child’s care will further influence the amount of clinical interaction.
Home programs are necessary for optimal surgical, prosthetic, and rehabilitation outcomes and to enable the parents and family to assist in the child’s care. Videotaping therapy sessions is an excellent teaching tool for both parents and community-based physical therapists involved in the treatment of a child. Digital photography makes it easier to personalize therapy sessions, and document progress. Web-based commercially available exercise programs are also excellent resources for home programs, some of which include specialized sections addressing rehabilitation for individuals with amputations.11 Exercise manuals can be modified to provide age-appropriate activities for infants and young children with limb loss and limb differences.12,13
Postoperative Considerations
Postoperative care for children who have amputations whether to address a congenital limb deficiency, or because of sarcoma, illness, vascular condition, or trauma, is similar to that of adults.14 When appropriate and depending on the center’s protocols, postop care should begin with wound care, swelling/edema control, shaping of the residual limb, bed mobility, transfers, mobility training, range of motion, strengthening, home exercise program, and parent education that addresses the above interventions.14 Swelling is common with both acquired and elective amputations. Edema control begins with postoperative dressings and continues with elastic bandage wraps and shrinkers after the wound is adequately healed. Properly applied dressings may control postoperative edema and facilitate prosthetic fitting.9,10,14 The type of postoperative dressing is determined by the surgeon based on surgical procedure, the age and activity level of the child, with additional variables, such as the distance of the child’s residence from the treatment center and parental preferences taken into consideration. After the wound is healed, edema control remains important. The principles for compression in infants and children with an amputation are approximately the same as those for adults.10,14 However, most children are too small for commercially available over-the-counter prosthetic shrinkers, necessitating the use of small elastic bandages and custom shrinker socks sewn with various sizes of soft elastic tubular bandages. Frequently used are strips of tape to secure the shape of the elastic bandage as it is being wrapped and extending the wrap around proximal structures to provide greater stabilization for security because of the child’s increased activity during the postoperative period (Figure 1). Detailed written instructions and videos of the techniques of applying elastic compression, elastic wrapping or stockings, should be provided to parents and caregivers.
Children who have a rotationplasty require a unique wrapping technique to control edema and shape the limb proximally (Figure 2). Typically, substantial swelling occurs in the foot, ankle, and calf areas as well as above and below the surgical incision. The foot is wrapped, incorporating the toes and ankle separately as is done for an acute ankle sprain.15 The wrapping continues up the limb in a figure-of-8 configuration, extending beyond the surgical site proximally and, if possible, around the waist to secure the wrapping. Control of proximal swelling that typically occurs after a rotationplasty is managed by using custom-sewn tights from elastic tubular stockings, compression shorts, and, even, support stockings. The amount of compression should allow an adequate degree of wound healing and should take into consideration the child’s tolerance to pressure.
FIGURE 1 Clinical photograph of elastic wrapping of the residual limb of an 8-year-old child with a short transfemoral amputation after revision for femoral overgrowth. The elastic bandage is wrapped around the waist for stabilization and high on the adductor area to control edema proximally.
Physical Therapy Treatments
Range-of-motion, strengthening, mobility, gait training, and functional activities depend on a child’s age, medical and neurologic condition, motivation, and interests, as well as the family’s ability to assist in the child’s care. The following factors should be considered when developing therapy goals and home programs: (1) every child is unique and develops at their own rate; (2) a child with multiple limb loss has special needs, and treatment interventions must be prioritized; (3) the environment needs to be adapted to the child for maximal function; (4) the child with a limb deficiency may have associated medical, neurologic, or orthopaedic impairments that will influence function and intervention; and (5) surgical amputations and revisions may take place at different developmental ages, so treatment should be centered on age-appropriate functions.9,10 General expectations and limitations associated with common congenital lower limb deficiencies are listed in Table 1.
FIGURE 2 Clinical photographs of elastic bandage wrapping techniques for a 12-year-old boy after rotationplasty. A, The foot and ankle are wrapped, including the toes. B, The elastic bandage extends up the limb in a figure-of-8 pattern and includes the proximal thigh. An additional elastic bandage is necessary to continue around the waist for stabilization of the wrap and for edema control proximally.
Early intervention is important to provide optimal outcomes and prevent the development of secondary disabilities. Family-centered services provide for maximal intervention.9,10 Exercise programs should be created with the parents’ input, taking into account their ability to perform the recommended interventions. Goals should be age-appropriate, functionally based, and within the limits of the degree of the limb deficiency or amputation level(s). With positive parental input, the child is likely to develop and grow with their peers and achieve all that they dream possible.
Infants (Birth to <12 Months)
When a child is born with a limb deficiency, where available, a referral should be made to a limb deficiency center that specializes in the management of congenital limb differences.10,16,17,18 At the center, the family meets with the physician and other team members to identify the infant’s strengths and briefly outline possible future surgical, prosthetic, and therapeutic strategies that address the infant’s physical impairments. Intervention should focus on assisting the infant to achieve motor and cognitive milestones in the context of their physical limitations.9
Families often come to their first clinic visit with a multitude of questions and fears about their child’s future and severity of the limb deficiency. Information is often gathered from many sources, including well-meaning family and friends plus Internet medical web sites and social media, such as Facebook groups, each having varying opinions about the infant’s care. The physical therapist can help and, if needed, redirect the family’s understanding of their child’s condition by using dolls with differing levels of amputations, videos, and photographs of children with similar limb differences, and samples of prostheses appropriate for the child. All are useful teaching tools for parents and can ease their anxiety and fears concerning the surgical, prosthetic, and therapeutic management of their child. The relationships between the specialized medical team including the physical therapist and the family begins at this point.
Introducing the family to other families with children who have similar limb differences is one of the most powerful interventions.9,10,16 The effects of family networking are lasting and help ease parental fears and concerns for their child’s future. However, the therapist should monitor and decipher information given to parents because not every parent is ready for all the information at the first visit. Too much initial information may increase parental anxiety and fosters fears that may focus on disabilities rather than abilities.
TABLE 1 Lower Limb Functional Outcomes and Special Considerations in Children With Lower Limb Deficiencies
Deficiency
Outcomes and Considerations
Unilateral Syme disarticulation
No limitations are expected in daily activities.
Able to participate in age-appropriate activities and sports, such as bicycling, skiing, dancing, and gymnastics.
Assistive devices are not required.
Unilateral transtibial level
No limitations are expected in age-appropriate daily activities.
Able to participate in age-appropriate sports and activities, such as bicycling, skiing, dancing, and gymnastics.
Assistive devices are not required.
Bilateral transtibial level
Limitations may occur on uneven surfaces, curbs, and stairs.
Participates in age-appropriate sports with limitations.
May require adaptive physical education or wheelchair for sports.
Rides a bicycle with adaptations.
Assistive devices are not required for ambulation.
Uses a wheelchair as backup.
Unilateral knee disarticulation or transfemoral amputation level
May have limitations in age-appropriate daily activities.
Requires adaptation to ride a bicycle; may ride without prosthesis.
Able to participate in sports; adaptations may be required.
Assistive devices are not required; uses crutches or wheelchair as backup.
Bilateral knee disarticulation or transfemoral level
Limitations expected ascending and descending stairs with possible challenges on uneven surfaces and curbs.
Encounters difficulty riding a bicycle; needs adaptations.
Adaptive physical education is required.
Uses a wheelchair for sports and as backup for mobility.
Has limitations in sports and age-appropriate activities.
May require assistive devices, although most do not.
Unilateral hip disarticulation
Limitations are expected on uneven surfaces, curbs, and steps. (Children with congenital deficiencies are quite functional; children with acquired loss have more difficulties.)
Bicycling is difficult with prosthesis; may ride without prosthesis.
Has limitations in running and sports; requires adaptations in sports.
Uses a wheelchair for sports and as backup for mobility.
May use crutches or cane for moderate to longer distances.
May use crutches and no prosthesis.
Bilateral hip disarticulation
Wheelchair is used for primary mobility; power mobility may be necessary if associated upper limb involvement.
Prosthesis use is for standing, exercise, and short-distance mobility.
Requires assistive devices.
Uses a wheelchair for sports.
Multiple limb loss, medical conditions, trauma, and neurologic impairments may influence the functional outcomes.
Adapted with permission from Coulter O’Berry C: Physical therapy management in children with lower extremity limb deficiencies, in Herring JA, Birch JG, eds: The Child With a Limb Deficiency. American
Academy of Orthopaedic Surgeons, 1998, pp 319-330.
An infant with a congenital limb deficiency will benefit greatly from early intervention. According to the American Physical Therapy Association, early intervention is based on six important principles: (1) the rapid growth and development in the first years of life provide the foundation for later development; (2) infants can actively interact, form attachments, and are capable of learning; (3) parents are the main providers of care and early learning experiences; (4) parents of children with special needs may require assistance or instruction in caring for their children; (5) the interaction between the biologic insult and environmental factors influences the developmental outcome; and (6) structured programming may improve the abilities of infants and young children.19
Intervention should begin by evaluating the infant’s gross and fine motor development to establish baseline records for the range of motion, strength, neurologic function, and movement patterns. In addition, the infant’s ongoing motor development should be monitored regularly as he or she grows and learns to roll, sit, pull to stand, and walk.10 These assessments should include any changes to range of motion, functional strength, weight bearing, and symmetry of both posture and movement.
Among infants with congenital limb deficiencies, asymmetry of movement is common. When asymmetry is present, parents and caregivers can be taught exercises for positioning, handling, and play, so that they foster symmetric movements as the infant develops. Parents are encouraged to move their infants to both sides and not be afraid of increasing the deformity or injury to the involved limb. They are taught to help the infant roll and transition into and out of sitting, kneeling, and standing equally to both sides. Symmetry and balance of movements during early motor activities are precursors to weight shifting in standing, cruising, and walking.9,10
In infants with congenital limb deficiencies or acquired limb amputations, range-of-motion exercises are designed to minimize the development of contractures and prepare the limb for future prosthetic fitting and function. With certain levels of limb deficiency, characteristic contractures and deformities are present. For example, longitudinal deficiencies of the tibia and the fibula are commonly associated with anomalies of the foot and ankle. These deficiencies may affect surgical, prosthetic, and orthotic management and hinder gross motor development. For example, a contracture of the foot may impact future options of a rotationplasty or limb lengthening in an infant with a proximal femoral focal deficiency (PFFD) with associated partial longitudinal deficiency of the fibula.
Similarly, hip flexion, abduction, and external rotation contractures are anticipated in infants with PFFD and those with short transfemoral limb loss.16,20 Instruction should be provided regarding both positioning and range-of-motion exercises. Early prosthetic fittings can be considered if the loss is unilateral. Parents and caregivers can be taught how to maintain mobility at the hips, knees, and ankles during simple caregiving activities such as diapering, picking up the infant, dressing, feeding, and play.9,10,16 Parents should be instructed in range-of-motion and positioning exercises.9,10 Hip and knee flexion contractures are common in infants who are born with short residual limb segments of the femur and tibia, respectively, as well as resulting from constrictive amniotic bands or a traumatic amputation.9,10 Prosthetic fittings have been used to manage knee flexion tightness in an infant as young as 6 months who was born with a very short unilateral transtibial amputation.9,10
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