Medical Mystery: Ectrodactyly

Doctors are helping people with a congenital condition lead more normal lives.

ByABC News
January 29, 2007, 2:20 PM

Jan. 29, 2007 — -- The rare congenital deformity ectrodactyly used to go by the simpler, more descriptive name of lobster claw syndrome.

Typically, a person with ectrodactyly has a cleft where the middle finger or toe should be, a condition that gives the hand or foot the appearance of a lobster's claw, but ectrodactyly patients can have any number of unusual arrangements of the digits.

Bree Walker has ectrodactyly. As an actress, she has appeared on the edgy sitcom "Nip/Tuck," where her character is asked if she had children, and if they inherited the condition.

"Tossed the coin and it came up tails both times," Walker's character replied. "They both have it. Ultimately, I decided they had every right to be here and to be different."

That's a case of art imitating life, since Bree herself has had two children. Both times that she became pregnant, she knew that there was a 50-50 chance that she would hand down the deformity to her children.

In 1991, Walker was a popular television anchor in Los Angeles. She and her then-husband, sportscaster Jim Lampley, decided to pursue a pregnancy despite knowing that the deformity could be passed along.

Already, her first child from a previous marriage inherited ectrodactyly, so she scrutinized her decision to try to have a second child.

The new baby, Aaron Lampley, was born with ectrodactyly on both feet and hands, just like his sister and mother.

"The controversy around Aaron's birth was the darkest moment of my life," Walker said.

Decades ago, a person diagnosed with ectrodactyly might join a circus sideshow, where the dramatic deformity would play to human fear and fascination with those considered freaks in society.

Members of the same family would work together -- like Grady Stiles Sr. and Grady Stiles Jr., known in the circus world as the Lobster Boys.

Dr. Joseph Upton, a hand and plastic surgeon in the Boston area, however, has helped patients with the deformity lead more normal lives, and in some cases, beat the deformity's crippling effects.

Sisters Samantha and Stephanie Wojciechowicz both suffer from ectrodactyly, a condition they inherited from their mother.