A limb difference is a variation in the development of an arm or leg, affecting its shape, length, or function. Limb differences can be congenital (present at birth) or acquired later due to injury, illness, or surgery, such as amputation.
What are congenital limb differences?
Babies with congenital limb differences are born with arms, legs, fingers, or toes that are missing, not fully formed, or formed differently. These differences may result from genetic factors, environmental influences (e.g., amniotic band syndrome), or unknown causes. Specific conditions like radioulnar synostosis (affecting the forearm) or fibula hemimelia (affecting the lower leg) target certain areas, while others, like skeletal dysplasia, may impact multiple body parts.
Some congenital limb differences are associated with other conditions. For example, children with cleft hands may also have cleft lip, foot abnormalities, deafness, or congenital heart and digestive issues, requiring coordinated medical care.
How common are congenital limb differences?
Prevalence varies by type. Polydactyly (extra fingers or toes) affects 1 in 1,000 babies, while amniotic band syndrome occurs in 1 in 10,000 to 15,000 births, per the Centers for Disease Control and Prevention (CDC). Early intervention, prosthetics, or surgery can help children adapt, and support organizations offer resources for families.
Books on Limb Differences
| Five Fingers, Ten Toes by Katie Kolberg Memmel Published 2012, a mother’s story of raising a son born with an upper limb difference, offering hope and practical advice. What Happened to You? by James Catchpole |
Expectations: Parenting Children and Teens With Limb Differences by Amputee Coalition A free 2011 resource from the Amputee Coalition, covering prosthetics, adjustment, and support for families. When Charley Met Emma by Amy Webb |
– a mix of practical advice, emotional support, and educational tools to help families understand congenital limb differences, support their child’s development, and connect with communities. Boston Children’s Hospital Shriners Children’s Hanger Clinic Amputee Coalition Lucky Fin ProjectResources for parents of children with congenital limb differences
Limbs for Kids
Offers a parent guide on congenital limb differences, adaptive strategies, and links to support networks for families.
Features info on congenital limb differences, treatment options (e.g., prosthetics, therapy), and family support services.
Offers care guides, prosthetic info, and family support for kids with congenital limb deficiencies across their U.S. network.
Provides prosthetic care info, family resources, and tips for kids with congenital limb differences.Nationwide Children’s Hospital Limb Deficiency Center
Features resources on prosthetics, therapy, and adaptive sports for kids with congenital limb differences.
Provides resources like “Pediatric Limb Loss and Limb Difference: An Introduction for Parents,” peer support, and info on prosthetics for congenital limb differences.
A nonprofit offering community support, awareness, and resources for parents of children with limb differences.
Our children with Limb Differences
* Listed children often have multiple diagnoses and attention should be given to the specific information in each child’s profile.
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