What is a limb difference? Simply put, it’s when someone’s limb is different than most people’s. This can be because of a developmental issue in the womb, or acquired as a result of an accident or disease.
Those who have limb difference have unique challenges, but still live full and active lives! You need only look to someone like Alexis Hillyard of Stump Kitchen and her guests to see that limb difference is not a barrier to doing everyday activities and having fun.
This guide is designed to help you learn about the different types of limb difference, both congenital and acquired. It also provides some information about prosthetics and where parents can find more resources on limb difference for children.
Congenital Limb Difference
A congenital limb difference is an issue affecting one or more limbs while still in the womb. The CDC estimates that every year approximately 1500 babies in the U.S. are born with upper limb differences and 750 babies with lower limb differences. Some of these babies will have both.
What Causes Congenital Limb Difference?
Current medical science has pinpointed some of the causes of congenital limb differences, but not all. Some limb differences are caused by the amniotic fluid in the womb entangling or fusing with the limbs of the fetus – also known as amniotic band syndrome.
According to the CDC, the following behaviors and exposures while pregnant all increase the chance of limb difference:
- Exposure to certain chemicals or viruses
- Exposure to certain medications
- Potentially the exposure to tobacco smoke (although more research is needed)
Other research suggests that taking a multi-vitamin while pregnant reduces the chance of limb difference.
The Types of Congenital Limb Difference
Longitudinal Limb Difference
When the radius, fibula or tibia are completely or partially missing. Two-thirds of longitudinal deficiencies are associated with other disorders such as Adams-Oliver syndrome, Holt-Oram syndrome, TAR, Fanconi anemia, and VACTERL syndrome.
Treatments may involve surgery or amputation to provide the best biomechanical outcome. Parents will be consulted with options by a specialist who will break down the benefits of a surgical procedure. For example, choosing to amputate part of a leg to enable prosthetic use as opposed to the possibility of not being able to walk at all.
Transverse Limb Difference
When an entire section of a limb does not develop, often due to amniotic band syndrome. The remaining limb often resembles an amputation stump.
Surgery may sometimes be required to help the limb grow without complications. Many of those affected with transverse limb differences go on to wear a prosthesis.
Refers to limb difference where some bones of the fingers and hand are missing, or when some fingers are missing altogether. This condition generally only affects one hand, in many cases the fingers affected may only be residual nubs of skin and tissue.
In some cases, surgery may be performed on the affected hand to help increase function. However, most children learn to use their unaffected hand as the dominant hand and their affected hand to assist.
The Lucky Fin Project was created by the mother of a girl born with symbrachydactyly. This organization now raises awareness and celebrates those with limb difference.
Having one or more extra fingers or toes. These are also referred to as supernumerary digits. Oftentimes these extra digits are surgically removed in childhood.
Having fewer than five fingers on a hand or five toes on a foot. This rarely requires any surgical intervention.
Ectrodactyly is an extreme instance of Oligodactyly where one or more central digits don’t form, resulting in a “claw” shaped hand or foot.
The webbing or fusion of toes or fingers. Some children will only have two digits fused, but it can be up to all five. Simple syndactyly is when only the soft tissues are fused. Complex syndactyly is when the bones are fused as well.
This condition will often be treated surgically in childhood, particularly in the hands, to help restore normal function.
Acquired Limb Difference
Thousands of young people a year will lose a limb due a traumatic accident or as a result of an infection or tumor. Medical, emotional and rehabilitation support staff work with the child and family to ensure the best possible outcome.
Those who undergo amputation at a young age have to deal with the trauma of surgery and loss. While infants may have little lasting emotional impact from an amputation, the older the child is, the more acute the distress. When an operation is planned, counseling is provided to the child and the family to help them prepare for this life-changing event.
In the case of traumatic amputation, there is often no time to prepare the child or family in advance.
Regardless, most children will experience a sense of loss, and everyone involved will need to exercise both love and patience in recovery.
As a child’s body is still growing rapidly, the considerations for amputation are different than they are for adults. A joint may not be preserved when the affected area is close to the joint. This is due to the risks of terminal bone overgrowth and the potential for more surgical intervention as the child grows up.
Some procedures such as rotationplasty for bone cancers near the knee are more involved and help the wearer gain more function when wearing a prosthesis.
Orthopaedic and rehabilitation teams will coordinate with the family on how to achieve the best biomechanical outcome for the child.
Children heal faster than adults, and with the right rehabilitation will learn to regain normal function quickly. Children also tend to recover from both the physical and phantom pain of amputation more quickly than adults. Children may also get over the emotional impact of amputation more quickly, though ongoing PTSD and depression are still very strong possibilities.
Rehabilitation will combine some combination of services including pediatric rehabilitation, physical therapy, occupational therapy, recreation therapy or social work. The program will be designed to help the child heal in both mind and body.
We have collected a series of children’s books you can buy to help children understand limb loss. These books are designed to help a child prepare or recover from limb loss through identification and shared experiences.
Prosthetics for Limb Difference and Growth
Prosthetics allow those with limb loss or limb difference to fully interact with the world – but there are unique challenges for children.
For infants, fitting a leg prosthesis usually happens between 8 to 14 months to help them begin to walk. For upper arm, they may be fitted as early as 4 to 6 months to aid in exploring their environment.
As children grow rapidly, prosthetics will need to be frequently readjusted and replaced. There is no hard and fast rule as to how often a prosthetic should be replaced. Children need a chance to fully learn how to use a prosthetic and explore the world with it before it is replaced, but prosthetics will also need to be made slightly larger for the child to grow into.
Photo Credit: Jen Reeves via E-Nable
Of course, kids will also be kids, and damage to their prosthetics is bound to happen. With 3D printing, inexpensive and fun prosthetics are able to be made at a low price. The DIY 3D printed prosthetic movement is growing, and many children are actively designing and printing their own prosthetics. This allows them to view their limb difference as an opportunity rather than a hindrance.
More Resources for Limb Difference in Children
Growing up with limb loss can be a challenge. Whether congenital or acquired, limb loss can make kids very self-aware of being different. Even a child who is in a supportive environment with friendly peers can get overwhelmed by these feelings from time to time. The teen years particularly can bring out these feelings.
However, at least one study has shown that children with limb difference have better emotional health than their peers. They learn very early on what it means to be different, and how to communicate with others about themselves and their feelings.
We encourage parents to read our guide on helping your child navigate growing up with a limb difference to help foster confidence. This guide also contains links to other resources for children with limb difference including adaptive sports programs across the U.S., and summer camp programs for limb loss.
We also encourage parents to look into our Paddy Rosbach Youth Camp summer program for children aged 10-17 with limb loss or limb difference. We have been inviting children to be part of an inclusive, fun-filled summer program since 2000 – all for free!
Our mission at Amputee Coalition is to ensure all of those who have limb loss or limb difference have the resources to be their best selves. For personalized resources for you or your child on managing limb loss or congenital limb difference, we encourage you to reach out to us.
Featured Image Credit: ABC RN