Pediatric amputations are a delicate matter that affect both parent and child. Learn more about the causes, types, functional milestones, and psychological/ social adjustments expected.
Live Forward with Amputation
by Paul H. Lento, MD
What is the rehabilitation team and what does it do?
Often the child with a limb deficiency or amputation and his or her family will be working closely with a rehabilitation team. The goal of the team is to understand the goals of the child and family as they relate to having a limb deficiency or amputation and help the family integrate the child’s disability into normal activities. For instance, the child with a newly acquired upper-limb amputation may need to learn how to put his socks and shoes on or a toddler with a congenital lower-limb deficiency may need assistance with learning how to walk with a new prosthesis. For these functional issues, the rehabilitation team can assist the developing child and family choose the best prosthesis to achieve these goals. Team members can also prescribe exercises and adaptive tools that accomplish these activities. Additionally, as the child grows, the rehabilitation team can help with adopting a new prosthesis that helps achieve appropriate physical milestones and perform various athletic or recreational activities.
The rehabilitation team typically consists of a physician (either a pediatrician or rehabilitation specialist), nurse, physical therapist, occupational therapist and a prosthetist. A more intensive team would also include a psychologist, social worker and recreational therapist. Each of these team members serves a role that helps the family and child develop normally and have a normal childhood.
The physician typically oversees the team, coordinates the efforts of the other team members and addresses any medical concerns that may be associated with the child’s disability. The nurse can serve as an excellent liaison between the rehabilitation team and the family and can provide education regarding limb care, medication usage and other medical issues. The physical therapist often deals with issues regarding mobility and can recommend exercises for the child to integrate the limb abnormality and prosthesis into a functional working unit for ambulation or recreational activities. An occupational therapist can provide strategies using the residual limb or prosthesis that assist with activities of daily living such as bathing, dressing, toileting and feeding. They also deal with assisting in transferring from one surface to another, like from a chair to a bed. The prosthetist is actually the individual responsible for making and modifying the prosthesis. This person is extremely helpful in providing expert opinion regarding the best and most functional components that best serve the individual with a limb deficiency or amputation.
What effects does having an upper-limb deficiency have on an infant?
Typically the first two months of an infant’s life consist of sleeping, being fed and interacting with caregivers. Most upper-limb deficient infants during this time therefore do not seem to have any significant functional limitations and do not appear to experience any developmental delay. However, between the ages of 2 and 6 months, an infant begins to use his upper limbs to explore the environment as well as to achieve various physical milestones like rolling, holding bottles and lying propped up on their tummies. By 4 months, infants can usually play with objects in the midline of their bodies and by 5 months they can transfer toys from one limb to the other. Additionally, they may also stabilize an object using one limb while the other upper limb manipulates it.
Infants with upper-limb deficiencies may perform these activities by using their residual limbs and be quite successful reaching many of these typical milestones, albeit sometimes slightly delayed. For instance they may hug a stuffed animal with their forearms or use their residual limb to swing and hit mobiles that are placed near them. They may also prop themselves up on their normal limb and drag an object closer to them with their residual limb.
Even though most babies are not fitted with an initial prosthesis until the age of 6 months, some infants receive a passive prosthesis earlier. Often the terminal device of this early passive prosthesis is a mitt that parents can use to attach rattles or other objects, stimulating interest towards the infants’ affected side. This initial passive prosthesis may be covered with a soft pink or brown resilient plastic used to blend in with the rest of the upper limb and give it a better cosmetic appearance. The prosthetic socket that connects the prosthesis to the upper limb is usually constructed of a plastic-type material placed over a cotton sock and suspended onto the limb by a harness that wraps around the infant’s upper body. An elastic sleeve may be a better suspension device.
Using a prosthesis at this age may lead to some concerns. First, the prosthesis may need to be refitted frequently since the infant is growing rapidly during this time. Therefore, it is important the skin around the prosthesis be monitored often for signs of redness or irritation indicating abnormal pressure from a poorly fitting socket. The prosthesis may also interfere with some activities that the infant may do without a prosthesis, such as rolling over.
As an infant gets a little older he may be fitted with a voluntary opening terminal device. A voluntary opening device is normally forcibly held in a closed position but then can be opened by the parent. This voluntary opening device allows parents to place objects such as a rattle or other toy in the affected limb, which encourages the use of the prosthesis and allows the baby to become familiar with grasp on the affected side.
Will an infant with a congenital limb deficiency do the same things that other infants do?
Parents often ask whether their infant who has an upper-limb deficiency will be able to do most things that other infants do such as sit, crawl, stand and feed himself. The simple answer is “yes.” To assist with these developmental milestones, the initial upper-limb prosthesis normally should be fitted when the infant starts to sit, usually around 6 months of age. The reason for this is that infants use their upper limbs to support themselves when first learning how to sit. Additionally, the initial prosthesis can help the child in playing and holding objects with two hands such as a bottle or holding a spoon. The prosthesis can assist with feeding in the later part of the first year. Although some may not crawl, parents should be assured that, like infants without limb deficiencies, many infants with upper-limb deficiencies often proceed directly to standing and then walking. The initial prosthesis can be helpful in pulling the child from a sit-to-stand position, another developmental milestone occurring toward the end of the first year.
Goals for Infants Who Use a Prosthesis
What are some common questions regarding toddlers who have limb deficiencies and the type of prosthesis they can use?
At around 1-2 years of age a child begins to verbalize needs, surf along furniture and walk. It is also at this time that infants start to understand the relationship of cause and effect. The ability to understand cause and effect is needed so that the child can be educated about how certain body movements operate a terminal device used in an upper-limb prosthesis. The initial terminal device may be shaped like a hand or small hook. Another popular terminal device around this age is the Child Amputee Prosthetic Project (CAPP).
Although the child may be 2½ years old before he fully masters operating the terminal device, he can start to appreciate that certain body motions (body-powered terminal devices) such as shoulder flexion can cause the device to open (voluntary opening). The voluntary opening terminal device powered by the child’s body movement enables the child to voluntarily open his terminal device, thereby grabbing various objects. This occurs via a cable that runs from the shoulder harness to the terminal device and tightens when the child moves his shoulder or shoulder blades. When tension is released off of the cable, the terminal device closes shut due to small rubber bands placed around the terminal device or hook. Each of these rubber bands contributes to the closing force. With more rubber bands there is greater closing force and grip strength. Alternatively, a voluntary closing terminal device may be tried. This terminal device is normally in the open position, but by pulling on the cable with graded tension, it can be voluntarily closed. In addition, if the child has a more severe or higher limb deficiency, a functional elbow joint may be incorporated into the prosthesis at this time. It works via a similar cable mechanism as the terminal device.
Most times the child needs to understand how the terminal device works before fully understanding how to operate the elbow joint. The elbow joint enables him to bring objects closer toward his body as well as place objects in many more locations in his environment. In this way the toddler can use the prosthesis not only in play but also in learning how to feed himself.
What are some activities that parents can do to help their toddler use the upper-limb prosthesis?
Initially, when a body-powered prosthesis is first used, the toddler may elect to use the normal limb to grab objects. However, a tip that may help the toddler start using the prosthesis more quickly is by giving him larger objects to hold. In this way, the child will be required to use both limbs in order to play with the object. Giving the toddler two objects to hold often will also cause him to put one object in the terminal device of their prosthetic limb, encouraging use. Other tricks include giving the toddler foam toys, which may more easily be picked up with an activated terminal device compared to harder objects made of wood or hard plastic.
A child may begin to realize how much force or tension is needed to pick up various objects. For instance, with a voluntary opening device, the child may start to learn that tension needs to be maintained through the cable via the shoulder harness and shoulder motions so that a fragile object will not be crushed. A wrist unit that can rotate into various positions can also be used by the toddler so that the terminal device can be in the best position to hold these objects. An occupational therapist and prosthetist are vital members of the rehabilitation team who can instruct the family and child in other skills and techniques that help incorporate the prosthesis into activities such as feeding, simple dressing, personal hygiene and drawing.
Common Goals for Toddlers with Limb Deficiencies
A myoelectric prosthesis is a type of prosthesis often used in upper-limb deficiencies and amputees whereby the toddler’s normal nerve impulses or electrical impulses from outside of the body, are taken and converted into a signal that moves the prosthetic limb. Although technology for myoelectric prosthesis is improving and some toddlers can learn to use them before the age of two, some available systems are still too bulky, heavy, expensive and prone to breakdown to be used in this young age group. As technology improves, hybrid prostheses are being developed that not only are lighter but combine electric with body-powered control. In this way, young children, particularly if he has bilateral involvement or short residual limbs, may be more adept at using them at younger ages.
When should a child have an active elbow joint placed into his upper-limb prosthesis?
Although children should learn how to lift objects with the prosthesis, it may be difficult for them to use an elbow joint if it is placed into the prosthesis. Usually, a child is unable to achieve use of the elbow joint before about 3 years of age.
What are some of the common things a school-aged child should be able to do with a prosthesis? What are some issues concerning the upper-limb prosthesis at this age?
School-aged children continue to engage in various forms of play but also should be able to toilet and dress themselves independently. The child with an upper-limb deficiency or amputee should be able to accomplish these skills just like any other child of similar age. Most of the concerns at this time deal with maintaining proper socket fit. One tip that helps prolong the life of a socket is to initially use a larger socket with several socks as liners that take up space inside of the socket. Then as the child grows, a sock may be removed as needed to maintain the proper fit. The child may also want to use different terminal devices that enable him to play various sports or play musical instruments. Additionally, a terminal device shaped like a hook rather than a hand may be more acceptable for achieving functional daily activities.
A myoelectric prosthesis with voluntary opening and closing capabilities could also be revisited if one was not successfully used before. Because of the abuse that some children may give to these units, as well as their expense and tendency to break, a body-powered prosthesis with shoulder harness may continue to be the best option.
Goals that a school-aged child should achieve are:
How do children with bilateral upper-limb deficiencies or amputations adapt to their disability? Should these children be forced to use a prosthesis?
Infants and children with congenital bilateral upper-limb deficiencies generally develop a remarkable ability to adapt to their situation. For instance, children with missing hands or forearms develop amazing tactile discrimination of the remaining limbs. They are able to use the residual limbs as functional hands, allowing them to hold objects and perform many of the necessary tasks involved in daily living. In fact, children with shoulder disarticulations or complete absence of one or both upper limbs may elect not to use a prosthesis at all. Many prefer to rely on their lower limbs in place of an upper limb(s) to perform typical activities of daily living such as bathing, dressing and feeding. Interestingly, since they are born with the limb deficiencies they do not have a distorted sense of body form that may occur if the limb or limbs were amputated later in life. Therefore, many may not feel the need for any type of prosthesis even for cosmetic reasons; any attempts to force the child to use one should theoretically be resisted.
Although not one type of prosthesis is ideal for all bilateral upper-limb amputees, some generalities can be made. For example, bilateral upper-limb amputees and even some unilateral high level amputees prefer a hybrid prosthesis, which combines a myoelectric prosthesis on one side with a body-powered prosthesis on the opposite side. Often, one side may be fitted with a more powerful terminal device to carry heavier objects whereas the other terminal device performs more delicate functions such as doing arts and crafts, fastening buttons or touching more fragile items. These terminal devices may be voluntary opening or closing depending on the age and appropriateness for the child. In general, whether or not a child will be a long-term user of an upper-limb prosthesis seems to be an individualized choice
What challenges face children with shoulder disarticulations?
Maintaining appropriate suspension on the trunk may be challenging for a child with a shoulder disarticulation who requires an upper-limb prosthesis. Additionally, the child will need to be trained on operating the artificial hand and elbow and must also learn how to move the prosthetic shoulder into an appropriate position. This often means that cables as well as a series of locking joints need to be used. For example, the child will first need to place the prosthetic elbow joint into an appropriate position by moving the opposite normal shoulder joint. Moving the opposite normal shoulder either in flexion or away from the body will cause part of the prosthetic limb to perform a certain function such as shoulder or elbow flexion. Then once the prosthetic joint is moved it can be locked for stability. The child can then manually rotate the prosthetic wrist using their normal hand into a functional position. Finally, just as described above, the opposite normal shoulder can be moved again, but this time it produces the terminal device to open or close depending on the type of terminal device. Although all of these actions sound tedious and very daunting, many children are able to fully operate a shoulder disarticulation or above- elbow prosthesis quite well with practice.
What are some of the goals for an infant with a lower-limb congenital deficiency or amputation between birth and 6 months of age?
It is understandable that parents of infants with lower-limb amputations or who are born with deficiencies may have several concerns and questions regarding typical motor development. Although children with multiple limb deficiencies may have some delay in attaining typical milestones, others with fewer abnormalities may not be delayed at all. Infants with toe, partial foot or very low transtibial limb deficiencies or amputations such as a Syme’s amputation may not experience any significant functional limitations and may only need an ankle or partial-foot prosthesis with toe fillers in order to obtain normal childhood milestones. Others with higher limb deficiencies or amputations may not have functional limitations in the first few months of life. In fact, not having a fully developed lower limb may enable the infant to be able to roll from their tummies to their backs at an earlier age than a child with normal lower limbs. Since any prosthesis should not hinder normal infant development, the goal of any first prosthesis is to attain the appropriate milestones, not hinder them. For these reasons, infants with lower-limb deficiencies should ideally be examined by a rehabilitation specialist or physical therapist within the first four weeks of life. In this way, a baseline examination can be obtained and various questions can be addressed that may assist in the development of the newborn or young infant.
With this general philosophy in mind, the first prosthesis for a child with a congenital lower-limb deficiency or amputation is typically tried at around 6 months of age. At this time, most infants have enough trunk control to begin sitting and may even be ready to pull themselves up to a standing position. This initial simple prosthesis will foster proper sitting balance by providing symmetrical weighting of the lower limbs while the child sits. This initial prosthesis will also enable the child to reach for objects nearby while encouraging play with others and develop social interaction. Physical therapy may consist of training both for the child and the parents, helping the child integrate the brace into activities such as rolling and lying. The infant may or may not prefer to use it when crawling. Since the child is not walking yet, the initial prosthesis will not have a knee joint built into it. Therefore, children may either crawl without a prosthesis or may elect to pull themselves along with their upper limbs since they will not be able to bend the knee of the initial prosthesis. (See Goals for 6 month old.)
Goals for infants up to 6 months old with lower-limb deficiency
What are some of the goals for an infant with a lower-limb congenital deficiency or amputation between 7 and 16 months of age?
Between the ages of seven and 10 months, a child begins to pull himself up to a standing position and eventually will walk somewhere between nine and 16 months. If a prosthesis is lightweight, of adequate length and comfortable to wear, the child may incorporate the prosthesis into the early stages of walking, which may entail furniture surfing and hand holding. A toy stroller, large exercise ball, walker or some other type of assistive device may also be tried in place of the furniture so that the child may start to practice walking. Normal walking involves a reciprocating rhythmic pattern of moving one limb past another and necessitates proper balance, weight bearing and strength. As the child becomes more confident and the gait becomes more normal, he will become comfortable and will fully use the prosthesis without anything to hold onto.
Although most toddlers at this age do not have a knee joint in their prostheses, if one is used it most likely will be a single-axis knee with a locking mechanism. This type of knee is extremely stable for the toddler taking his first steps but when he wants to sit or kneel, a button can be pushed or a cable pulled by the parent and the knee can be bent. A true mobile knee is typically not used until the child reaches 3 years of age.
As the child first learns to stand and walk, the prosthesis should be worn for short periods of time to allow for proper accommodation of the weight-bearing residual limb into the socket. The parents should again check the skin for abnormal pressure points that may appear with redness and/or swelling. It is during this time period that the prosthetist may allow the family to bring home a prototype or temporary prosthesis for a few days to see how the child reacts to it before making the final permanent prosthesis. In this way, regular physical therapy may be needed to assist the parents with various goals.
Goals for infants 7-16 months old with lower-limb deficiency
What are some of the goals for toddlers with a lower-limb congenital deficiency or amputation between 17 months and 3 years of age?
Children at this time are becoming much more mobile and begin to develop more normal walking patterns. Additionally, they begin to climb stairs, jump and run. It is during this time that a mobile knee joint is integrated into the prosthesis and the child becomes more adept at walking and negotiating various terrains. Even though a prosthesis is used, the young child tends to rely on the normal limb to propel himself both in running and jumping. Climbing the stairs is a regular activity for most toddlers, but a child with an above-knee amputation or limb deficiency will do steps one at a time whereas a below-knee most likely will be able to climb them normally. The rehabilitation team should help the child and family learn how to achieve various milestones during this time including getting on and off chairs, getting up from the floor and getting in and out of a car as well as any other challenges that may arise during this transition period.
What are some of the goals for a child with a lower-limb congenital deficiency or amputation as they begin school and reach adolescence?
Most children develop a sense of self-identity by the time they reach school-age. Those born with a congenital limb deficiency realize that they are different before this time, making transition into school somewhat less traumatic. Children with newly acquired limb amputations, however, may need parental guidance and support during this age as they try to adapt into the school system. Meetings with teachers as well as the rehabilitation team may be fruitful in assisting with this transition. Athletic competition may be used as a means to encourage self-esteem, strength and confidence with the lower-limb prosthesis; however, it needs to be composed of more durable components.
During this age an alternative form of assistance, such as crutches, may be tried in place of the prosthesis. Typically, two types of crutches can be used for lower-limb deficient children: axillary or Lofstrand. Axillary crutches are the most familiar type of crutch and reach all the way up to the armpit or axillary area. The child should not bear weight on the axillary pad, as this can become uncomfortable after a while and may even lead to a nerve injury in the upper limbs. The other type of crutch is a Lofstrand crutch. This crutch does not go so high up on the arm and therefore does not provide as much support as axillary crutches. It is composed of a forearm cuff and padded hand bar attached to an aluminum tube. It is useful for these children to know how to use crutches so that when they have their prosthesis worked on, they do not need to rely on a wheelchair for transportation.
What are some difficulties that face children with bilateral lower-limb deficiencies or amputations?
Children with bilateral lower-limb deficiencies face other hurdles that single-limb deficiencies don’t face. The first is that bilateral lower-limb amputees do not have a “normal” foot to contact the ground. This normal foot can be very helpful in sensing the position of the normal lower limb on the ground; positioning is very helpful for us to be able to balance ourselves as we stand and walk. Bilateral amputees who use prostheses do not have this capability. In fact, some bilateral limb amputees feel as though they are walking on stilts, which is in fact what they are doing. Therefore, it is common for children with bilateral lower-limb deficiency to use some other assistive device like axillary or Lofstrand crutches to improve their balance and help them walk.
Children with bilateral above-knee limb deficiencies will require locking knee joints until they are 6 years old. Ambulating on two mobile knee joints requires exceptional balance and strength, so the child may not be ready for this prosthetic change until that time. Parents should also realize that the amount of energy required to ambulate with any type of lower-limb prosthesis is greater than for a child without any deficiency in the lower limbs. In fact, a child with an above-knee limb deficiency or amputation has to use more energy to walk at the same speed as a child with a below-knee limb deficiency, who in turn requires more energy than a child without any deficiency. This also means that any child with bilateral lower-limb deficiencies uses more energy than a child with one side affected, with the most energy being used by a bilateral, above-knee limb-deficient child.
Unfortunately unilateral or bilateral lower-limb amputees are sometimes fitted with prostheses of unequal length compared to their opposite limb. Unequal lower limbs can often contribute to other musculoskeletal problems such as hip and back pain. Therefore it is a wise to have limb lengths measured from time to time especially after initial use of a new prosthesis to ensure that a leg-length difference does not exist or develop.
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