Limb Differences
If you have received a prenatal test result for your child, we are here to support you. Our services are free. Talk with one of our trained consultants to determine if parent care coordination would be helpful for you.
Limb differences are the partial or complete absence, deformation, or length differences of the legs, arms, hands, feet, fingers, or toes. Parts of these extremities may be crooked, malformed, fused, incomplete, or uneven. An unborn child may have too many or too few fingers or toes. Limb differences may impact the function of the limbs or make certain physical activities difficult. Limb differences may be caused by genetic defects, disorders or diseases impacting the muscles, joints, or bones, and environmental factors such as exposure to tobacco, certain medications, and chemicals in the womb. Limb differences occur in 1 in 1,000-4,000 live births.
Screening and Diagnosis
Limb differences are diagnosed during routine prenatal ultrasounds, but can also be diagnosed via physical examination after birth.
Treatment/Prognosis
Limb differences are typically non-life-threatening physical deformities and, depending on the needs of the individual child, may be be treated with physical and occupational therapy, a splint or brace, surgery, or a prosthetic.
Medical advances are continually improving treatment options and outcomes so consulting with specialists and major children’s hospitals may be beneficial to finding the best possible care.
Below are additional support resources that may be helpful.
Sources:
Comprehensive Limb Difference Program | Children's Healthcare of Atlanta (choa.org)
What are congenital limb differences? | Nicklaus Children's Hospital (nicklauschildrens.org)
Limb-Length Discrepancy and Limb Differences | Gillette Children's Specialty Healthcare (gillette children's.org)
Congenital Limb Differences | Boston Children's Hospital (childrenshospital.org)
Life Without Limbs
Diagnosis-Specific Support
Our mission is 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.
GCI’s mission is to build global capacity for quality clubfoot treatment and equitable service provision through advocacy, education and collaboration.
We have as a continuous goal, to provide support, share experiences and supply information to parents, affected children and their siblings. We choose to focus on the individual child and the challenges they may face. We emphasize their abilities, not their disabilities. In our support work, we often may inform families of regional services and resources that are available, but we do not endorse any specific institution or medical treatment. One of our priorities is to reach parents of the newborn with an upper limb anomaly. New parents can be given hope and encouragement through our extended network of parents.
International Child Amputee Network (I-CAN), 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 Jordan Thomas Foundation returns children and adolescents to a life without physical limitation by providing quality prostheses until adulthood, serving as a caring resource for the child and family living with limb differences and tirelessly advocating for insurance fairness.
MiracleFeet increases access to proper treatment for children born with clubfoot in low- and middle-income countries through partnerships with local healthcare providers.
Our vision is to help children and young adults with challenges in their lives to overcome adversity with a positive attitude and to understand that you can do anything you want if you put your mind to it.Our mission is to sponsor disabled athletes in a multitude of sports, including extreme sports and to seek funding to allow youth and young adults with disabilities to attend camps, sporting events and to get the prosthetics or other tools they need to thrive.
No Limits Foundation is a non-profit organization 501 (c)(3) providing camps for children with limb loss and differences. The camp aims to provide education, mentorship, and support to these children and their families. Camp No Limits fosters a welcoming and supportive community in the hopes of helping all those who attend the camp.
The Ponseti International Association is the global leader in training and educating healthcare providers on the treatment for congenital clubfoot. The Ponseti Method was developed at the University of Iowa by Dr. Ignacio Ponseti, M.D. This method for clubfoot treatment is nearly 100% effective when used properly by a trained health care provider and is considered the "gold standard" treatment for clubfoot. Health care workers in underprivileged areas of the world with limited access to surgical facilities can be trained to use the method, helping hundreds of thousands of children walk...around the world.
Our eldest child was born with bilateral clubfeet and Amniotic Band Syndrome affecting the left hand. In 1993 the internet was just a baby too. We didn’t know where to turn for information about these conditions. We made our decisions based on what our doctors told us. We knew nothing about non-surgical methods of treating clubfeet and as a result, our baby had clubfoot surgery. I created this site so others could learn about the Ponseti Method. I hope this site will help others to find information and support.
The Lucky Fin Project is a 501(c)(3) nonprofit organization that exists to raise awareness and celebrate children and individuals born with symbrachydactyly or other limb differences (upper, lower, congenital, and amputee).
Everyone needs prayer, and the team at Life Without Limbs is ready and eager to come alongside you in this most powerful endeavor.
Facebook Groups:
PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However, we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics.
Started by a mother with a baby that has Symbrachydactyly, this group is for people affected by Symbrachydactyly. Join in if you are a person with Symbrachydactyly, you have a family member with Symbrachydactyly, or if you have a friend with Symbrachydactyly.
I created a page several years ago when my Son was diagnosed with Bilateral Club Feet. This discussion group is a continuation of that.