Pediatric Limb Loss and Limb Difference: An Introduction for Parents

Created 03/2020

There are many questions parents of children with limb loss or limb difference(s) may have. And, while additional research is needed to assist in answering some of those questions, this fact sheet will outline information and supports that are available to families today. In order to best assist in identifying key information and resources, we have created this fact sheet as an introduction for parents of children with limb loss and limb difference. The Amputee Coalition also suggests that you explore the links to additional resources available at the bottom of this sheet or on the Amputee Coalition’s website.

Families typically become part of this community in two different ways. Annual surveys of specialized pediatric amputee clinics in the United States repeatedly show that approximately 60% of children with limb loss and limb difference are congenital and 40% are acquired.¹

Definitions

• Acquired Amputee/Amputation: the surgical removal of a limb(s) due to complications associated with disease or trauma.
• Congenital Amputee/Amputation: a condition where a person is born without a limb or a portion of a limb.
• Orthotics: the branch of medicine that deals with the provision of use of artificial devices such as splints and braces.
• Prosthetics: the field of research and expertise in designing and building artificial limbs. Prosthetic can be used as an adjective as well (example: prosthetic limbs).
• Prosthesis: the most accurate term for an artificial device that is built to replace a missing body part. The plural of prosthesis is prostheses. Prostheses are worn by those who lost limbs dur to disease or trauma, and those who were born with congenital limb difference. A person who is an expert in prostheses and their use is called a prosthetist.

The U.S. Centers for Disease Control and Prevention estimates that, every year, approximately 1 in every 1,900 babies born in the U.S. are born with a congenital limb difference. Some of these infants will have both upper limb difference(s) and lower limb difference(s). Children living with limb difference may encounter difficulties and limitations as a result. The child’s healthcare team will be able to provide them with the proper treatment and care that will allow the child the ability to live a long, healthy, and productive life. These treatments may include but are not limited to prosthetic devices, orthotics, surgery, and rehabilitation (physical or occupational therapy). These treatments can vary for each child and are designed to ensure proper functionality and, at times, assist with appearance.

Thousands of children will lose a limb due to trauma or as a result of an infection or cancer every year. In cases of traumatic amputation, there often is no time to prepare the child or family in advance. Most children will experience a sense of loss regarding their limb loss/limb difference, and everyone involved will need to exercise love and patience during recovery. The considerations for amputation are different for children than adults due to the rapid and continual growth of children’s bodies. There are more risks of bone overgrowth and the possibility of more surgical intervention as the child grows. The child’s healthcare team will coordinate with the child’s family on how to achieve the best outcome for the child.

“How the parents accept a limb deficiency and how well they cope with it has a great deal to do with how well the child does, either with or without a prosthesis.”
Yoshio Setoguchi, MD

There are unique challenges in deciding whether or not to have a child fitted for a prosthesis. For infants, fitting a leg prosthesis usually happens between 8 to 14 months to help with beginning to walk. For an upper limb, children may be fitted as early as 4 to 6 months to aid in exploring the environment.

As children grow rapidly, prosthetic devices will need to be frequently readjusted and/or replaced. Children need time to fully learn how to use a prosthesis and adapt to the world with it before it is replaced. Prostheses will sometimes also be made slightly larger for a child to grow into the device.

Ultimately, the decision whether or not to fit a child for a prosthesis will be made by the parents/caregivers of the child with the expert advice and recommendations of the healthcare team.

The contents of the following Web sites are solely the responsibility of their authors and do not necessarily represent the official views of the Amputee Coalition. The Amputee Coalition cannot and does not make specific recommendations for products or services. No Amputee Coalition endorsement is implied.

ActiveForever.com
http://activeforever.com/

Adaptive Mall
800/371-2778
https://www.adaptivemall.com/

Adaptive Specialties Pediatric Adaptive Equipment
877/808-4540
https://www.adaptivespecialties.com/pediatric-adaptive-equipment.aspx

Assitivetech.net
National Public Website on Assistive Technology
404/894-4960
http://assistivetech.net/

Discount Medical Supplies
http://www.discountmedicalsupplies.com/

Enabling Devices – Assistive Technology – Products for the Disabled
https://enablingdevices.com/

Live Oak Home Medical Products
http://buyliveoak.com

Maddak Aids for Daily Living
http://www.maddak.com/

MedicalProductsDirect.com
http://medicalproductsdirect.com/

North Coast Medical & Rehabilitation Products
https://www.ncmedical.com

Performance Health
https://www.performancehealth.com/

RehabMart
800/827-8283
https://www.rehabmart.com/all-categories.asp

Simple Comforts
http://www.simplecomforts.com/

Texas Assistive Devices (upper limb devices)
http://www.n-abler.org

Theraproducts
http://www.theraproducts.com/

 Wrightstuff.biz  (Adaptive Daily Living Products)
http://www.wrightstuff.biz

Limb Loss Definitions
https://www.amputee-coalition.org/resources/limb-loss-definitions/

Prostheses for Children with Limb Differences
https://www.amputee-coalition.org/resources/prostheses-for-children/

Resources to Help Children Understand Limb Loss
https://www.amputee-coalition.org/resources/understand-limb-loss/

¹ Robert E. Tooms, MD http://www.oandplibrary.org/alp/chap32-01.asp

It is not the intention of the Amputee Coalition to provide specific medical or legal advice but rather to provide consumers with information to better understand their health and healthcare issues. The Amputee Coalition does not endorse any specific treatment, technology, company, service or device. Consumers are urged to consult with their healthcare providers for specific medical advice or before making any purchasing decisions involving their care.

© Amputee Coalition. Local reproduction for use by Amputee Coalition constituents is permitted as long as this copyright information is included. Organizations or individuals wishing to reprint this article in other publications, including other websites must contact the Amputee Coalition for permission to do so, by emailing a request to rc@amputee-coalition.org.