The patient begins by removing his ear

SHARE The patient begins by removing his ear
IMG_4293_1_999x613.jpg

A high quality prosthetic ear like this costs about $10,000 to create. | Neil Steinberg / Sun-Times

“Take your ear off for me, please,” says Rosie Seelaus.

Randy James complies, reaching up and detaching his right ear, which Seelaus created for him out of silicone seven years before. The ear is shabby, stained and mottled from use.

James is a doctor with the Department of Veterans Affairs in Las Vegas, where the fierce desert sunlight is tough on his prosthetic ear.

Seelaus is an anaplastologist at the University of Illinois at Chicago Hospital’s Craniofacial Center, on the Near West Side, sculpting artificial body parts for people who have lost them through injury or disease or, as with James, never had them to begin with.

And I’m there because I’m wondering where the disfigured fit into the glacial advance made by those with disabilities. Society seems more compassionate toward those on the edges; has life for them changed?

James, 58, was born with Goldenhar syndrome, a genetic condition that distorts the face. Some children with Goldenhar, like James, are born missing an ear or part of an ear — he had only the right lobe. James’s jaw was undersized and skewed. He underwent 35 surgeries, including one to construct his right cheekbone using bone shaved from his ribs. He pulls up his shirt to show off slashing scars across his ribcage.

“I used to tell bullies I was mauled by a tiger at the zoo,” he says.

*

For most of recorded history, children born with disfigurements were viewed as wonders, portents or punishments — if they were allowed to live.

“A couple hundred years ago, people born with craniofacial conditions, they were just putting them in a bucket of water,” says Dr. David Reisberg, an oral plastic surgeon at the Craniofacial Center.

Until not so long ago, those reluctant to see anyone whose appearance strayed beyond the range of the usual had the law on their side. Chicago was one of many cities with an “ugly law” designed primarily to reduce public begging. It read:

Any person who is diseased, maimed, mutilated or in any way deformed, so as to be an unsightly or disgusting object, or an improper person to be allowed in or on the streets, highways, thoroughfares or public places in this city, shall not therein or thereon expose himself or herself to public view…

The law wasn’t repealed until 1974.

*

Rosie Seelaus, an anaplastologist at the Craniofacial Center, part of the University of Illinois at Chicago’s Hospital & Health Sciences System, helps to create a prosthetic for patient Victor Chukwueke, a Nigerian medical student who lost part of his face due to neurofibromatosis. | Neil Steinberg / Sun-Times

“So, Randy, can I take your bar off?” says Seelaus.

James is in Chicago for a week, having his new ear created. He has a C-shaped metal armature fixed to the side of his head, anchored to his skull with gold screws. The prosthetic ear snaps onto the bar.

“I’ll take your bar off so I can make the substructure,” Seelaus says.

She removes the screws and lifts the structure from his head — the first time it’s been taken off in seven years, since James decided to get a prosthetic to replace the crude ear surgeons had created for him.

This involves a range of high-tech gear. A CT scan is taken of his left ear. A computer creates a mirror image of the scan, which a milling machine uses to carve a right ear from a block of dense, blue wax. Seelaus takes this prototype and makes a second, skin-toned ear from softer dental wax, which she puts on James to adjust its form and fit. A colorimeter and a spectrophotometer are used to gauge exact color values.

“Color is essential to having a successful prosthesis outcome,” says Seelaus, who spends hours matching shades, then fitting the ear to James’ head.

When she’s done, the ear is pressed into dental stone to create a mold she fills with silicone to make the final ear. She mixes liquid pigments into splashes of clear silicone, colors she dabs into clear plastic, which she holds against James’s head, trying to match his skin tone. Seelaus paints the colored silicone in, layer by layer. To imitate tiny veins, she uses strands of red and purple yarn.

“Being born with a facial difference becomes a life journey that has a lot to do with acceptance,” says Seelaus, who has done this work for 16 years. “I’ve learned with patients who are burn survivors — not victims, survivors — initially their relationship with the prosthesis changes, too, throughout their lives… What I try to tell them is, they’ve been through a lot already, it will also take adapting to the new way they look.”

*

Stares and thoughtless comments are a daily part of life for people with disfigurements. There are many groups, though, who long suffered abuse from society but are now more accepted. Is there any hint that those with damaged faces are travelling the same path?

“People would really have to change a lot to make facial deformity the new normal,” says Kim Teems, of FACES, the National Craniofacial Association. “It’s a very hard thing to go through, not only being looked at strangely but all the pain of surgeries.”

Based in Tennessee, FACES began in 1969 as the Debbie Fox Foundation. Fox was born in Chattanooga, Tennessee, on Dec. 31, 1955, with a massive cleft from her upper lip to her forehead, her eyes pushed to the sides of her head: basically a hole where her face should be.

“Her parents resigned themselves to raising their youngest daughter as a hidden child — secluded from outside eyes,” a newspaper account noted.

By third grade, she attended school via telephone hookup, standing to recite the Pledge of Allegiance with classmates she’d never met. Good Housekeeping magazine ran a story in 1970. It showed her only from the back.

That certainly has changed. Even a decade ago, a child such as Mary Cate Lynch, 3, might seldom have gone out in public. She was born with Apert syndrome, a rare condition that affects her head, face, feet and hands. Today, Mary Cate has her own cheery website, introducing her with photos and video. Her mother, Kerry Lynch, has taken her to 80 Chicago-area schools to present a program, often tied to the class reading “Wonder,” that explains Apert syndrome.

“Every parent does what they think best,” says Lynch, a nurse. “I thought the best thing I could do is to educate others so they wouldn’t be afraid of it.”

*

As someone who not only wears an artificial ear and has sprays of scars under his jaw but is also a doctor working with veterans whose faces have been damaged by war or illness, Randy James doesn’t see much improvement in how society views people with facial disfigurement.

“In some ways, it’s worse,” James says. “With the rise of social media, you can be an anonymous bully.

Others disagree.

“My impression is society is more accepting and more aware of the magnitude of injuries our soldiers and sailors, marines and airmen are coming back with,” says Capt. Craig J. Salt, a plastic surgeon at the U.S. Naval Medical Center in San Diego. “They’re more accustomed to seeing disfigured patients because of media awareness, with social media… People might be a little less shocked to see a disfigured patient.”

He believes there are just more disfigured people out there.

“We’re seeing injures far more catastrophic than we used to see,” says Salt. “Massive tissue destruction, horrific burns… The combination of the level of destruction with amazing lifesaving capability of the front lines gives you a patient population who would not have survived in the Vietnam era… We have people entering rehabilitation horrifically disfigured in significant numbers.”

*

On her fifth day working with him, Seelaus heats James’s new ear in an Imperial V Laboratory Oven. Then, wearing light-green oven mitts, she removes the cylindrical mold. After it has cooled, she pries the mold apart.

“Look at that,” she says, brushing away excess silicone, then almost sings, “I think that looks pretty goooood.”

She lifts a startlingly human-looking ear. After a few trims and a touch of color here and there, she attaches it to James’s head. From two feet away, you can’t tell it isn’t a natural human ear. James is delighted.

“It looks a lot better, huh, Hon’?” he says to his wife, who later pronounces the new ear “sexy.”

Happy as he is, when I ask James if I could take a picture of him wearing his new ear, he refuses. He is worried not about the photo’s appearance with this story but that it might later be lifted and included in some online “hall of monsters.”

There is no such reluctance with Seelaus’s next patient, Victor Chukwueke, a Nigeria-born medical student with neurofibromatosis, a disease of rapidly growing tumors that crushed his jaw, distorted his face and left his right eye an empty hollow. He is here to get a new false eye and surrounding socket, to help put his future patients at ease. Even without a prosthetic, he smiles and poses as I click away.

Chukwueke puts his situation neatly into perspective.

“We all have an issue,” he says. “We all go through things in life, go through difficulties. You don’t have to let your challenges bring you down or let you be sad and depressed. It’s a matter of perception. How you see it.”

A longer version of this story appears at http://mosaicscience.com/stories on Mosaic, the web site run by Great Britain’s Wellcome Trust.


The Latest
Health experts point to data in Australia, where flu season runs from May through September, to get a sense of what’s possible for Americans. This year by mid-July, nearly 205,000 cases were reported and 181 people have died, according to the data.
Defense attorney Beau Brindley faced perjury and obstruction of justice charges seven years ago in a bench trial before U.S. District Judge Harry Leinenweber, who cleared the rising-star lawyer.
Diets that regularly include bioflavonoid-rich foods have been associated with longevity and a reduced risk of cardiovascular disease, diabetes, some types of cancer and neurogenerative diseases.
The shootings include a person seriously wounded by a Chicago police officer in Back of the Yards.
The man, 21, was discovered about 1:15 a.m. in the 3400 block of West 79th Street.