Other Issues

What are some common feelings or concerns parents have regarding a child with a limb deficiency or amputation?

As with any child, appropriate care for those with limb deficiencies or amputations involves ensuring that their life be filled with joy, happiness and love. To assist with this, parents must understand the normal developmental milestones that occur during infancy and childhood.

Additionally, they should be aware that feelings of guilt or anxiety they might develop as it relates to the child’s limb abnormality may be detected by the child, potentially affecting normal psychosocial development. Often the parents initially feel as if they did something wrong or were negligent and feel they should have done something differently.

These feelings should be resisted and if necessary, counseling for the parents and possibly for any older child should be considered early in the rehabilitation process.A peer support group where parents share concerns, exchange information or observe other children using prostheses may be helpful in coping with some of the difficult issues. Where appropriate it may be necessary to obtain professional counseling, which can be helpful in dealing with the many emotions that occur during the initial period after the infant’s birth or child’s amputation.

However, common questions that parents often have include whether the child will be able to crawl, walk, play, feed himself, go to school, develop friendships and participate in various activities. The information presented here will be helpful in addressing many of the psychosocial issues as well as physical concerns pertaining to a child with a limb deficiency or amputation. In addition, many of the questions pertaining to various prostheses and their components will be answered.Parents may need to understand that there are differences emotionally between children with congenital limb deficiencies and those who require a limb amputation.

Since they are born with their limb problem, many children with congenital limb deficiencies usually do not experience a distortion of self image because they grew up with their limb-deficiency. Although they may realize that they are “different” by the time they are 1 or 2 years of age, they may not experience the same distortion of body awareness or self-consciousness as that of a child who experiences a limb amputation later in life and hence, many of these children do not need counseling. In contrast, like anyone coping with a significant altering event in life or distortion of body image, children who require an amputation may need more counseling and guidance as it pertains to their limb abnormality.

What are phantom limb sensation, phantom limb pain and residual limb pain?

For a complete discussion of these conditions, please refer to the Adult Amputee section on Disaboom.com.

Are there any surgical treatments that help lengthen a limb or help improve the function of a child with a limb deficiency?

Some children with congenital limb deficiencies may be candidates for an Ilizarov procedure. This orthopedic surgical procedure involves gradual lengthening of the limb over many months using implanted pins connected to a traction device. Choosing candidates for this procedure should be at the discretion of an orthopedic surgeon having vast experience, as this surgery can be met with various complications including neurovascular injury, infection or weakened bones.

Candidates for this complicated procedure include children with amputations or limbs of unequal lengths or who have short residual limbs and need a longer residual limb in order to fit a prosthesis well. In this way, the child may experience an improvement in overall functioning. Patients with Proximal Focal Femoral Deficiency or PFFD may be candidates for certain surgical procedures that improve the functioning of the residual limb. Recall that in this longitudinal-type congenital deficiency the child’s thigh bone or femur fails to develop to the normal length; however the child’s normal knee, ankle and foot developed normally.

The family, surgeon and rehabilitation team may elect to fit a prosthesis without any surgical intervention or they may entertain the possibility of various procedures that may help shape the residual limb to better function with a prosthesis. For example, one surgical option would be a Syme’s amputation. This procedure is best used when the child’s femur is about 50 percent or greater than the normal side. This procedure involves removing the child’s foot just above the ankle, allowing the child to utilize his own knee joint with a below-knee prosthesis.  Occasionally the knee joint may be fused allowing the residual limb to be functionally lengthened. Then the child would be fitted with an above- knee prosthesis, requiring at some point a functioning knee joint.

One disadvantage of this surgery is that the limb is made even shorter and may not be too cosmetically appealing. Another option is the Van Nes rotationplasty. With this procedure, children with PFFD as well as those with tumors of the lower limb are converted into functional below-knee amputees. The surgeon removes a part of the limb and then rotates the foot and ankle 180 degrees, reattaching them onto the femur. This effectively creates a knee joint out of the ankle joint, serving as an excellent residual limb to fit a prosthesis.

One final but uncommon type of surgery associated with upper-limb amputees is the Krukenberg reconstructive technique. Children with long transradial amputations or congenital deficiencies are candidates for this procedure, which involves separating the forearm bones, forming them into a pincer-like mechanism. Although the limb now can function to hold on to objects, patients and their families often have difficulty with the poor cosmetic appearance of the residual limb. However, this surgery may be an option for a bilateral upper-limb amputee or a child who has visual difficulty, since tactile sensory feedback can be preserved. This procedure is not commonly performed in the United States but could be done in underdeveloped nations where prosthesis technology may not be available.

What problems can develop that involve the growing bone of a child with a limb deficiency or amputation?

During normal child development, excessive bone may grow around the site of the limb deficiency or amputation. Unfortunately, this normal bone growth may become uncomfortable to the child because the residual limb can no longer fit into the socket. Because of this, the excessive bone may need to be removed. Until the child stops growing the bone may reaccumulate, and repeat surgeries may be necessary. Unfortunately, surgeries that have attempted to halt this “normal” growth have not been met with great success. One type of amputation that is not associated with this bony overgrowth is when the amputation occurs through a joint itself. This type of amputation is referred to as a disarticulation and is beneficial, since the end of the limb can tolerate more weight than an amputation through a bone.

Can children with congenital limb deficiencies or amputations participate in activities and play sports?

Most children function quite normally with a congenital upper- or lower-limb deficiency; however, they may need assistance in figuring out ways to do certain activities like riding a bike, playing in a playground or participating in sports. Adaptive equipment and various sports prostheses are available that can accommodate most limb deficiencies. Some children, however, may chose to play sports without a prosthesis and will function quite well. In fact, there have been professional and Olympic athletes with limb deficiencies in football and baseball.

As with all children, parents should encourage these children at least to try as many activities as they wish, hopefully finding one that they can enjoy for the rest of their lives.For the child who does use a lower-limb prosthesis, parents are encouraged to cover it with some type of rigid outer shell known as an exoskeleton. This helps give the prosthesis a more lifelike lower-leg appearance and also it helps protect other children from the rigid and potentially harmful interior or endoskeleton of the prosthesis.

What are some of the available resources for children with congenital limb deficiencies or amputations?

National Limb Loss Information Center (NLLIC)
900 East Hill Ave Suite 285
Knoxville, Tn 37915-2568
1 888 267 5669
1 888 AMP KNOW
www.nllicinfo@amputee-coalition.org

Amputee Resource Foundation of America
6480 Wayzata Blvd
Golden Valley, MN 55426
www.amputeeresource.org, www.naric.com

National Rehabilitation Information Center (NARIC)
1010 Wayne Ave Suite 800
Silver Spring, MD 20910-3319
1 800 346 2742
www.child-amputee.net

Information regarding children with amputations and limb deficiencies

www.kidscanplay.com/whatwecando.htm

Good resource for parents of children with limb deficiency or amputations

Association of Children’s Prosthetic and Orthotic Clinics (ACPOC)
222 South Prospect Ave
Park Ridge, Il 60068
708 698 1632
www.acpoc.org
www.aalonline.com

A Canadian website with good basic information
International Child Amputee Network (I-CAN)
Email MAISER@hoffman.mgen.pitt.edu
Make first line of message read: subscribe i-can

List for the parents and families of child amputees
www.Pubmedcentral.nih.gov
Government resources

References

Edelstein, JE. Rehabilitation for children with limb deficiencies. In Orthotics and Prosthetics in Rehabilitation. Lusardi, MM. Nielsen, CC. (eds). Mass. Butterworth-Heinemann 2000. p 553-568.

Cummings, DR Pediatric prosthetics. New Dev in Prosthetics and Orth 2000; 11(3):653-679.

Riley, RL. Child amputees. In Living with a below-knee amputation. Riley, RL ed. New Jersey. SLACK Inc. 2005. p197-208.

Thompson, DM. Rehabilitation for persons with transfemoral amputation. In Orthotics and Prosthetics in Rehabilitation. Lusardi, MM. Nielsen, CC. (eds). Mass. Butterworth-Heinemann 2000. p 521-542.

Engstrom, B. Van de Ven C. Introduction. In Therapy for amputees. 3rd ed. Engstrom, B. Van de Ven C (eds). New York. Churchill-Livingston 1999. p 1-10.

Evans, M. Pediatric patients with lower-extremity amputations-clinical decision making. In Prosthetics and Orthotics. Seymour, R. (ed) Maryland Lippincott Williams and Wilkins 2002. p 259-280.