Infants who are born with a missing or partial upper limb, or children who lose an upper extremity to accident or amputation need to be evaluated by a prosthetist as soon as possible. Often it is appropriate for infants and very young children to be fit with a passive prosthesis right away so that the limb is incorporated into their developing body image. This can also help children socially as they begin interacting with their peers.
Limited communication skills, combined with rapid rates of physical growth, mean that infants and children require more frequent office visits and more careful observation of their progress from month to month. Ideally, the evaluation process for a child born with a congenital limb deficiency should begin within three months after birth. The fitting process, however, does not begin until the child and family are ready for the prosthesis.
Caring for your child
Having a child is possibly the most exciting and rewarding milestone in a person’s life. When a child is born with a limb deficiency, parents may find themselves feeling sad or depressed initially. Those initial feelings of anger, grief, fear, and guilt soon subside, though, as parents see that their baby is happy, healthy, and hitting developmental benchmarks at an expected rate. It is important for parents to remember that they did not cause this to happen, and there was nothing they could do to prevent it. Often, it is not known why a congenital loss of a hand or arm occurs, but we, at Hanger, do know that children who are born with congenital limb differences go on to live very normal, and even exceptional lives.
Children with limb differences are unaware of their difference as infants, so there is no need to offer special treatment or fret over their future. Children adapt to their world with the gifts they are given at birth. The best things that parents can do for their limb deficient child is love, appreciate, and care for him/her, like they would any child. Parents quickly realize that limb deficient children are capable of doing anything they put their minds to, like playing sports, musical instruments, and finding their path in life through experimentation and practice.
Parents should prepare themselves for a number of challenges however. A plan of attack will ensure a positive outcome for the parents, the peers, and most importantly, the child. People are naturally curious about differences they see in others. Do not be offended when strangers “stare,” but rather, use it as an opportunity to teach others about differences. For example, a parent might say to a stranger, “I noticed you were looking at my son’s arm. This is a myoelectric prosthesis that was made especially for him because he was born without his arm. Look what it can do! Isn’t this amazing?” This way, a child grows up feeling proud of his/her difference and will initiate those conversations on his/her own in the future. A child entering school for the first time will be “armed” with self-confidence and be able to teach his/her peers about his/her difference and help to minimize those feelings of anxiety when encountering new situations and new people. There will always be challenges with peer groups, but a child who is taught from the beginning that he/she is special, unique and valued, will carry those positive feelings into their lives and have a greater ability to handle challenges as they arise.
Adapting to a prosthesis can be difficult, but encourage your child to wear the prosthesis without negative pressure. Developing a routine is very useful. The child will grow to expect that the prosthesis is put on consistently. It is important that they like the prosthesis and want to wear it, not because mom and dad make them wear it.
Physical Therapy for Pediatric Upper Extremity Users
Babies and children tend to be more adaptable than adults when it comes to wearing a prosthesis. Infants born with an absent or partially formed limb can be fit with a prosthesis around 3 months of age and begin accepting it as part of their body image. Children should begin physical therapy and be fit with a prosthesis as soon as possible.
It is important to find a physical/occupational therapist who specializes in children and their developmental stages. Therapy will involve encouraging the infant or child to use both arms. For babies this might be reaching out for a stuffed animal or attempting to pick up a large ball. For toddlers, therapeutic activities include bead stringing, sewing cards, toy musical instruments and construction sets. Preschool age children enjoy games that involve using their prosthesis, and also practice basic daily activities such as eating and getting dressed. Children over the age of six are likely to use their prosthesis to grasp objects, so at this point, it is useful for therapy to include training them to control the terminal device, wrist and/or elbow.
Consult your prosthetist for their recommendation for an experienced pediatric upper extremity therapist. Or call our National Upper Extremity Program at (800) 642-6682.