Tot's dad designs unique prostheses

From the Atlanta Journal Constitution:

Michael Haag was born with a rare birth defect that left him with only one fully developed hand. But it's not keeping him from doing just about everything other children do.

"Yay, I caught Bobbi," the precocious 3-year-old exclaimed Monday morning, as he used a specially designed prosthetic fishing rod to reel in his favorite stuffed bunny in his family's living room. "She's heavy!"

Thanks to his gadget-minded father, other disabled children one day may have similar experiences.

So far, Robert Haag has crafted two "helping hands," which are child-friendly prostheses that allow his son to have greater use of his left hand — and have a little fun along the way.

Haag recently teamed with a nonprofit group called the Open Prosthetics Group to try to mass-produce his inventions...

...Michael was born with congenital limb loss, a birth defect that each year afflicts about 400 children born in the United States alone, according to Children's Healthcare of Atlanta.

Instead of settling for standard prosthetic options, Robert Haag went to work inventing his own...

He figured out how to disassemble the standard adult-sized prosthetic limbs and reattach kid-friendly things like a dinosaur head, whose mouth opens and closes when Michael moves his arms, allowing him to grasp toys and other items between its "jaws."

Michael's fishing rod is a store-bought Spider-Man reel attached to the end of a prosthetic arm. Michael used it to catch several fish on a recent trip to Florida.

"They were blowfish," he explained Monday, showing off his red and blue fishing pole.

Through Open Prosthetics Group, families like the Haags share information on the Internet in hopes that a manufacturer will step forward.

"If they can take our ideas and use them to help other kids, God bless them," Robert Haag said.

PA legislation seeks better coverage for artificial limbs

From the Pittsburgh Post-Gazette:

Some health insurance plans in Pennsylvania evaluate coverage for prosthetics on a case-by-case basis or limit coverage to as low as $1,000 per year and one prosthetic over a lifetime, even for young children who will outgrow the devices, said the Amputee Coalition of America, which is advocating for better coverage.

State Rep. Bernie O'Neill, R-Bucks, wants to change that.

He has introduced legislation that would prohibit insurance companies from instituting lifetime caps on prosthetic devices. The change would set a uniform standard across the state, Mr. O'Neill said at a recent Capitol press conference

Without legislation ensuring coverage, insurers may reduce or eliminate coverage for prosthetics, he said.

People who are born without limbs or lose them to amputation face many obstacles, he said. "Not being able to pay for limb replacement to return to work or lead productive lives shouldn't be among them," he said.

PBS Kids Video

Came across this PBS Kids video at limbdifferences.org

How Doctors Think

This evening's PBS News Hour featured an interview with Dr. Jerome Groopman about his new book How Doctors Think. The interview gives viewers a fascinating insight into the methodology of how doctors often go about making a diagnosis.

The premise of the book is that, according to Dr. Groopman, physicians are prone to quickly latching onto a specific diagnosis without taking the time (or being allowed to take the time) to consider other factors that could lead to a different conclusion. In the interview, Dr. Groopman details his own experience with misdiagnoses by multiple hand surgeons which would seem mildly humorous if it wasn't at the same time so disconcerting.

I've ordered the book and will post my reaction once I've completed it. The Amazon page dedicated to the book includes a Publisher's Weekly and Washington Post review.

You can download an audio podcast of the interview here. You can also view the video via streaming video on the PBS News Hour website.

Scientific team delivers advanced prosthetic prototype

A couple weeks ago, the Johns Hopkins University Applied Physics Laboratory issued this press release detailing the delivery of the first prosthetic prototype developed by the Revolutionizing Prosthetics 2009 team. The project is underwritten by the Defense Advanced Research Projects Agency (DARPA) Revolutionizing Prosthetics Program with a goal of providing state of the art prosthetics for military personnel who have suffered limb loss in the line of duty. From the APL release:

An international team led by the Johns Hopkins University Applied Physics Laboratory (APL) in Laurel, Md., has developed a prototype of the first fully integrated prosthetic arm that can be controlled naturally, provide sensory feedback and allows for eight degrees of freedom—a level of control far beyond the current state of the art for prosthetic limbs...

... The advanced degree of natural control and integrated sensory feedback demonstrated with Proto 1 are enabled by Targeted Muscle Reinnervation (TMR), a technique pioneered by Dr. Todd Kuiken at RIC that involves the transfer of residual nerves from an amputated limb to unused muscle regions in appropriate proximity to the injury. In this case, the nerves were transferred to the pectoral area of the patient’s chest. This procedure provides for a more intuitive use of a prosthetic arm and allows for the natural sensation of grip strength and touch.

During clinical evaluation of the limb at RIC, Jesse Sullivan, a patient of Dr. Kuiken, demonstrated substantial improvements in functional testing, such as the ability to reposition his thumb for different grips, remove a credit card from a pocket, stack cups while controlling his grip force using sensory feedback verses vision, and to walk using the free swing mode of the limb for a more natural gait. Harshbarger says that critical to Proto 1’s development was closely working with patients such as Sullivan to help the team understand the attributes patients look for in new prosthetic limbs. The limb system also includes a natural-looking artificial covering that was created using photographs of the patient’s native limb taken before the accident.

Military innovations have often found their way into commercial products. This is certainly a worthwhile undertaking on behalf of injured soldiers and I hope whatever breakthroughs come as a result are made available for commercial development so civilians with limb deficiency and loss can benefit as well.

Oregon Health & Science University

For those seeking a treatment option in the Pacific Northwest, the Oregon Health & Science University's Plastic & Reconstructive Surgery Clinic specifically identifies these categories of services related to congenital disorders:

• Pediatric reconstructive surgery for children with cleft lip/palate and other congenital deformities of the head, face, ears, chest and extremities.
• Hand surgery related to congenital disorders, carpal tunnel and traumatic injury

The University's website also provides this overview of congenital hand deformities. I've added OHSU to the list of Hospitals & Treatments Centers listed in the right-hand-side of the site.

Iowa boy's story captures media's attention

The Des Moines Register had this article a couple days ago on Aaron Flat. Aaron is a 10-year-old boy who suffers from Holt-Oram syndrome which has left him "with two holes in his heart, and arms that are just small flaps near his armpits, with three fingers each." As if that wasn't enough, Aaron, his older brother and younger sister (who also suffers from a milder form of the same syndrome) "grew up in a troubled home and was placed in foster care." Aaron and his siblings are now living with their Aunt and Uncle who have begun adoption proceedings.

From the Register article:

"Aaron has moved in with his aunt and uncle in Des Moines, now that there is hope that medical professionals can fit him with prosthetic arms...

The arms will cost $100,000, with lifelong care for follow-ups and adaptations adding another $1 million...

Two months ago, Des Moines prosthetist Jonas Chladek told the family that the latest technology - a prosthetic device that uses the body's muscles to operate arms - would be expensive...

By the end of last week, Chladek finally got a call from Medicaid, the health care insurance for low-income Iowans. Aaron's prosthetics will be covered, and Chladek will donate his services.

The Shriners also are meeting with the family this week to explore their options. And Iowans have begun to donate to a fund set up for his long-term care.

Once he is fitted for the arms, which include a shoulder joint attaching muscles to electrodes that will move his elbow and wrist and rotate his hand, Aaron will be able to pick up items as heavy as a suitcase.

Upcoming ACA Volunteer Night

If you happen to be in the Washington, DC metro area, The Amputee Coalition of America is organizing another volunteer night for Wednesday, May 16 from 6:30 p.m. – 8:30 p.m. ACA is located at 1436 U Street, NW, Suite #104 , between 14th and 15th Street. You can RSVP to Jeremiah Perez at (202) 742-1885 or jperez@amputee-coalition.org

ACA needs volunteers to help with activities in support of prosthetic parity legislation it is currently advocating for in several states.