drnetcher.com

drnetcher.com is another good resource for basic questions about congenital hand conditions. The site is easy to navigate and doesn't burden the visitor with an overabundance of medical terminology. The site is hosted by Dr. David T Netcher who is chief of hand surgery at Texas Children's Hospital and runs the hospital's Hand Surgery Clinic.

The site offers visitors a chance to ask questions directly of Dr. Netcher. I haven't attempted to utilize the contact form so I can't say how timely or informative the answers are. If anyone has, please feel free to add your feedback in the comments section.

UK Resources

Courtesy of Google Alerts, I was made aware of a UK-based organization called Reach. Formed in 1978, the organization's mission has evolved from a single issue advocacy group to a more comprehensive support network for families of children with hand and arm deficiency. The group's "why we are here" explanation includes challenges that many of us are familiar with:

"There are many types of hand or arm deficiency, the anomaly is so varied that obtaining support can be difficult. Many professionals involved in health care do not see enough cases to build up expertise. Reach hopes that by pooling the knowledge of its membership it can offer a level of support to all."

Reach has organized branches throughout England as well as groups in Scotland and Ireland. Reach can be contacted at 0845 1306 225 or by email at reach@reach.org.uk

Overcoming the Challenges

Yesterday's Memphis Commercial Appeal had this article on high school senior Robert Long. Robert was born with thrombocytopenia absent radius or TAR syndrome. As the reporter details:

"He's missing the radius, or smaller bone, of his lower arms. He also didn't have a muscle that was important for controlling his thumbs, and thus his grasp. He underwent five surgeries, beginning at six months of age. One was to stitch a muscle from the pinky fingers to his thumbs."

The article covers Robert's relationship with girlfriend Christy Stratton who is deaf. Despite his condition, Robert's managed to learn some sign language in an effort to better communicate with her.

What really comes through in the story is Robert's resolve to learn and master skills that would seem difficult given his physical challenges. His mother uses a line to describe him that could apply to any successful person regardless of whether they have a disability.

"He doesn't do everything the way we do it," said his mother, Brenda Long. "He improvises and finds a way to do it."

Polydactyly

I've been scouring major online information sources to gauge the frequency of entries for congenital limb differences -- particularly those that affect the hand. Came across this Wikipedia entry on Polydactyly (which means that an extra digit is present on the hand or foot). The rates of occurrence were higher than I would have expected -- about 1 in 500 births.

"the frequency varies greatly from population to population. It is higher in some groups (an example is the Amish in the United States) due to the founder effect.

The entry includes six photos of variations of the condition -- four of which are x-rays. The explanation is followed by several lists including one that details real and fictional characters who were affected by Polydactyly.

Given the familiarity many have with resources like Wikipedia, I hope that we'll see more entries specific to congenital limb differences. And if specific entries don't exist, I hope savvy parents, relatives and friends will take the time to create new entries so that those looking for information in the future can find it more easily.

ASPS: Counseling Parents

If you're curious how plastic surgeons are instructed to counsel parents of children with congenital hand malformations -- there's a resource on the website of the American Society of Plastic Surgeons that will give you some insight. You'll need to scroll almost to the bottom of the page to find the relevant section. Key section is excerpted here:

"Consultation with the patient's parents must stress the importance of restoring function to the malformed hand, even if cosmetic appearance must be a secondary consideration. The unique function of the hand throughout life mandates that function be restored as fully as possible--e.g., providing pinch and grip function will be essential to many occupations."

Cartoon Character with Limb Difference

My discussion board monitoring led to me finding out that one of my oldest daughter's favorite shows -- Maya and Miguel on PBS Kids -- includes a character Andy with an upper limb difference. It appears that Andy is missing his arm just below his elbow. The QandA section includes a question about Andy's arm.

eMedicine.com: Congenital Hand Deformities

I just came across what appears to be a pretty comprehensive article on congenital hand deformities at emedicine.com. While this is a medical article and written for a medical audience (which disqualifies me from commenting on it authoritatively) -- it does have some helpful facts about the rates of occurrence and also details treatment options for each specific condition. Some of the interesting facts include:

• A 20-year study in New York gave the incidence of congenital hand deformities as 1 in 626 (Conway, 1956). Regional and ethnic differences exist. Camptodactyly, syndactyly, and polydactyly are the most common abnormalities. Other studies give the incidence as 0.7%.

• Only 5% of congenital hand anomalies occur as part of a recognized syndrome.

The article separates the conditions into 7 categories or types. Type 1 is Failure of Formation which is what my daughter is currently diagnosed as. More specifically she's in the subcategory: "Transverse arrest at the carpal, metacarpal, and phalangeal level."

Of personal interest in the explanation of this subcategory is that the article notes that "these are often difficult to distinguish from constriction band syndromes or as part of a cleft hand." Which would mean that both the initial diagnoses we received from doctors in Omaha could be understood given their lack of familiarity with the condition.