Limb Loss: Adapting to the Challenges and Reaching Milestones

There are currently over 2 million Americans living with limb loss. Pediatric limb deficiency results from birth defects, tumors, severe infections or traumatic injury. Regardless of the cause, the loss of a limb places a significant physical and emotional burden on a child and their entire family.

Coping with a limb difference or deficiency involves everything from accepting the appearance, battling body image concerns and learning to use adaptive prosthetic equipment to maximize function. The most important part of this process is sharing knowledge, education and expectations of living with limb loss.

Limb loss in children is recognized as either congenital (present from birth) or acquired. Nearly one in twenty-eight newborns per year are born with some form of birth defect and the medical costs of care for children with disabilities resulting from birth defects have been estimated to exceed $1.4 billion annually. Not all birth defects result in limb loss, but it is estimated congenital limb deficiencies affect 1,500 to 4,500 children per year with nearly 60 percent of these differences involve the arm or hand.

The specific cause of congenital limb deficiencies is frequently unknown, but is understood to relate to a combination of both genetic and environmental factors. Limb development occurs early in pregnancy, between weeks 4 and 8, at a time before a mother may even know she’s pregnant. Research has shown children with a congenital limb deficiency do not experience the feeling of “loss.” Instead, they naturally attempt functional movements working toward developmental milestones pushing boundaries and figuring out ways to accomplish tasks regardless of their disability.

Acquired amputations in childhood often result from cancer, severe infection or trauma. The majority of traumatic amputations in children are seen under the age of 5, and the most common causes are lawn mowers, farm equipment and crush injuries. For prevention it is important to understand the circumstances of lawn mower accidents. These injuries frequently begin with a young child sitting on an adult’s lap on a riding mower or a child not seen or heard approaching over the noise of the mower. While congenital amputations most commonly affect the upper extremity, traumatic limb losses more frequently involve the lower extremity in this age group.

Just as there is not one prosthesis to fit all children, there is no single treatment model for all families experiencing limb loss. In general the use of prosthetic limbs for children should match their individual needs based on their level of functional development (sitting, grasping, crawling, standing, walking, etc.). When evaluating the advantages and disadvantages of prosthesis use, it is important to note that despite all our technological advances, no prosthesis will provide the sensory feedback and sensation of a child’s bare skin of their residual limb. For this reason, patients with upper extremity limb deficiencies often prefer not to use a prosthesis until they are much older compared to those with a lower extremity limb loss. While there will be a learning curve, a prosthetic device should aid in a child’s function and discovery, not hinder it. It is important to keep in mind if a young child is not interested in a prosthesis initially, as their functional needs and body image evolves, it is never too late to revisit the possibility!

In addition to significant technological advances in surgical and prosthetic care, a significant push has been made within society to create programs and support groups which promote acceptance and exposure of individuals with limb loss. These developments have continued to open doors for children with limb loss to participate in sports and recreational activities with their peers. To learn more about the tailored resources available through the Adaptive Sports Medicine Program at Nationwide Children's Hospital, click here. Or call 614-722-5175 to make an appointment in the multidisciplinary Limb Deficiency Clinic.