Since Microsoft’s Super Bowl commercial highlighted the life of a boy with congenital limb loss, I thought I would discuss the diagnosis here and share some resources for kiddos with limb loss.
Info from the CDC : http://www.cdc.gov/ncbddd/birthdefects/UL-LimbReductionDefects.html
Upper and lower limb reduction defects occur when a part of or the entire arm (upper limb) or leg (lower limb) of a fetus fails to form completely during pregnancy. The defect is referred to as a “limb reduction” because a limb is reduced from its normal size or is missing.
How often does limb reduction defects occur?
CDC estimates that each year about 1,500 babies in the United States are born with upper limb reductions and about 750 are born with lower limb reductions.1 In other words, each year about 4 out of every 10,000 babies will have upper limb reductions and about 2 out of every 10,000 babies will have lower limb reductions. Some of these babies will have both upper and lower limb reduction defects.
What problems do children with limb reduction defects have?
Babies and children with limb reduction defects will face various issues and difficulties, but the extent of these will depend on the location and size of the reduction. Some potential difficulties and problems include:
- Difficulties with normal development such as motor skills
- Needing assistance with daily activities such as self-care
- Limitations with certain movements, sports, or activities
- Potential emotional and social issues because of physical appearance
Specific treatment for limb reduction defects will be determined by the child’s doctor, based on things like the child’s age, the extent and type of defect, and the child’s tolerance for certain medications, procedures, and therapies.
The overall goal for treatment of limb reduction defects is to provide the child with a limb that has proper function and appearance. Treatment can vary for each child. Potential treatments include:
- Prosthetics (artificial limbs)
- Orthotics (splints or braces)
- Rehabilitation (physical or occupational therapy)
Camps/ Activities for Children with Limb Reduction Defects:
Challenged Athlete Foundation <– this was the foundation featured in the above Microsoft Commercial
It is the mission of the Challenged Athletes Foundation® (CAF) to provide opportunities and support to people with physical challenges so they can pursue active lifestyles through physical fitness and competitive athletics. CAF believes that involvement in sports at any level increases self-esteem, encourages independence and enhances quality of life
The mission of the Adventure Amputee Camp is to encourage children with amputations or limb differences to stretch their potential and imagination, and explore all that is possible.
Camp No Limits <– volunteered for this Camp 1 summer during their early years
Camp No Limits is the only camp for young people with limb loss & their families, creating a network of support for all the campers. Camp No Limits offers therapeutic programs with specialized professionals, including physical & occupational therapist, prosthetist & adult amputees role models.
two primary missions:
1: To promote social interactivity, self-esteem and self-confidence among adult men and women, and especially among veterans, new and youthful amputees through recreational and competitive amputee soccer programs, and
2: To identify, develop, and train athletes to represent the United States in elite International amputee soccer competition, and in Paralympic competition when the sport achieves that status.
Resources regarding limb reduction defects:
Rady Children’s Hospital in San Diego– has a great list of resources!
International Child Amputee Network (I-CAN) a tax exempt, 501(c)(3) organization, is dedicated to promoting education, support, information, and empowerment to traumatic and congenital limb different children and their families. I-CAN is committed in bringing together these children and their families to enhance the quality of life for the children and young adults based on the concept of mentors helping families, parent helping parents, and kids helping kids.
The Limbs for Life Foundation is a global nonprofit organization dedicated to providing fully-functional prosthetic care for individuals who cannot otherwise afford it and raising awareness of the challenges facing amputees.
Mission: To reach out to and empower people affected by limb loss to achieve their full potential through education, support and advocacy, and to promote limb loss prevention.
Limb Differences <–also has a great list of resources!
This site is a continuation of the fine work of Peggy and Peter McLoughlin, who retired their super-kids.org website and newsletter in 2002. Our sincere hope is that through this online resource you will find the practical information as well as the emotional support to help make your journey into the world of limb differences easier than you may have initially imagined.
Our goal is to provide a comprehensive resource to the families and friends of children with limb differences.
It is our desire to assist as many families as possible with the challenges of upper limb differences. We are based in Long Island, New York but welcome families from anywhere.
Categories: Diagnosis Discussion