Resources

An integral part of the Hands to Love mission is to provide support to children with upper limb differences and their families. Below is a collection of resources for this purpose, including FAQs, website links, books, journal articles, and other groups that may be beneficial for the children and families we serve.

The “Understanding Upper Limb Differences” series aims to be a resource for individuals with upper limb differences and their families. This series is written by Dr. Paul Dell, an Orthopaedic surgeon at the University of Florida and co-founder of Hands to Love.

Click here to view all of the articles!

FAQ’s

The following Q&A is an excerpt from the American Society for Surgery of the Hand website. Please feel free to explore their website for further helpful information.

A: Babies born with hands that are different than the normal hand have a congenital hand difference.

A: The upper limb is formed between four and eight weeks in utero. The embryo develops an arm bud at four weeks. The tip of the arm bud sends messages to each cell as the upper limb forms. Millions of steps are followed to form a normal arm. Failure of any of these steps to occur can result in a congenital ULD.  Research continues into further understanding of this embryonic process. Some congenital ULDs may occur due to a genetic cause. Many congenital ULDs just occur without an apparent cause.

A: One in twenty children is born with some difference from normal, either major or minor. The different groups of congenital upper limb differences include missing parts of the arm (failure of formation), webbed or fused parts of the hand (failures of separation), extra parts present in the hand (duplication), undergrowth or overgrowth of parts of the hand, or constriction band syndrome.

A: The most common congenital hand difference in the Caucasian population is webbed fingers (syndactyly – see Figure 1). The most common congenital hand difference in the black population is an extra, sixth digit on the little finger side (post-axial polydactyly . The most common congenital hand difference in the Asian population is an extra thumb.

A: Because there are so many different congenital upper limb  differences, it is important that your child be evaluated by a hand surgery specialist to help determine if any treatment is needed. Some congenital hand differences are associated with genetic disorders or other medical problems. Your hand specialist may request further genetic evaluation by a geneticist, or may request further medical testing by your pediatrician or family physician.

A: Immediately after the birth of a child with a congenital abnormality, the parents may feel shock, anger and guilt. These are normal emotions. All the dreams of a perfect baby did not take place. Each family member must cope with their feelings. Rarely is there anything parents or doctors could have done differently.

Your newborn doesn’t realize that he or she is different. The baby has all the normal needs of any newborn. The way the baby has formed is normal for him or her, without pain and without a sense of loss. Talk to your physician about support groups or professional help.

A: All babies born with congenital hand differences should be evaluated by a hand specialist to make an individual assessment of the type. Depending on the type of congenital hand difference, treatment may be recommended. For example, webbed fingers are surgically separated. Extra digits can be surgically removed with reconstruction of the remaining digit if necessary. Hand function can be improved if the functions of thumb pinch or finger grasp is compromised. Some congenital hand differences may need therapy to help improve hand function. In some cases, no intervention is necessary.

Additional Resources

Parenting Tools

Browse articles from the National Association of School Psychologists recommended by Sandy Duley, PhD and Steve Duley, PhD who are consultants to Hands to Love in the area of school psychology.

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Adaptations

Are you looking for more information related to adaptations? Cecilia Cruse, OTR/L of School Specialty, has been kind enough to recommend the following resources to Hands to Love. Below each website has a summary of the types of information and products they provide. She is available to receive questions regarding adaptations for school and play from parents. You can reach her at the Abilitations Website. 

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Friends of Hands to Love

You can never have enough support! Below are links to other organizations and websites that offer support and resources for children with upper limb differences and their families.

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ULD Resources

Additional resources for upper limb differences.

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