Heal­ing the scars be­neath the sur­face

Pa­tients get new faces, but also have to look af­ter their real selves

Saskatoon StarPhoenix - - CANADA - Sharon KirKey

The eyes were his. The ears and fore­head, too. But when Mau­rice Des­jardins’ wife saw him im­me­di­ately af­ter surgery, her first thought was: That is not my hus­band.

Des­jardins lost his nose, lips and jaws to the blast of a hunt­ing ri­fle seven years ago. Af­ter the in­jury, he would only leave the house wear­ing a sur­gi­cal mask. But in May, the 65-year-old be­came the re­cip­i­ent of Canada’s first face trans­plant. Now, Des­jardins’ wife says, he looks even bet­ter than be­fore he was wounded.

“Très beau, très beau,” she re­peated over and over in in­ten­sive care. “You are beau­ti­ful.”

At a packed press con­fer­ence this week to an­nounce Des­jardins’ metic­u­lously de­tailed op­er­a­tion, lead sur­geon Dr. Daniel Bor­suk stood in tri­umph: his team had spent years plan­ning for the 30-hour pro­ce­dure to re­place his man­gled face with that of a brain-dead donor.

“The in­te­gra­tion of this new or­gan has been re­mark­able,” he said.

“We are fi­nally able to de­liver Mau­rice a new face, a new chance at life.”

But ad­just­ing to a new face is dif­fer­ent than liv­ing with a new heart or kid­ney. The face is how we com­mu­ni­cate, how we recognize each other — for bet­ter or worse, it’s what makes us uniquely our­selves. When sur­geons first trans­ferred the faces of the dead onto the liv­ing more than a decade ago, ethi­cists ques­tioned whether doc­tors could ad­e­quately as­sess the psy­cho­log­i­cal im­pact of such an au­da­cious pro­ce­dure: on pa­tients, on donors, on their fam­i­lies, on so­ci­ety.

“We are left with the ques­tion of what the face trans­plants, and who the new per­son ac­tu­ally is,” writes Shar­rona Pearl in Face/ON: Face Trans­plants and the Ethics of the Other. “So much of our iden­tity re­volves around our faces; does the face of an­other bring with it the iden­tity of an­other?”

Amer­i­can film critic Roger Ebert had his lower jaw re­moved dur­ing ag­gres­sive surgery to treat his cancer. In a poignant blog post­ing in 2010, he re­flected on what it might mean to “be whole again” af­ter sur­geons an­nounced they had given a new face to a Span­ish farmer.

“What if I could go to Spain and re­turn with a com­plete face?” Ebert wrote. “If you passed me on the street, you might mis­take me for a nor­mal man.”

But Ebert, who died in 2013, said he feared “some­thing within me might re­coil at the sight” of a new face. “Oh, I have no squeamish­ness about wear­ing an­other man’s face af­ter he has no need of it; I sup­port trans­plant of all sorts, and when I die I hope my organs can be of use to some­one,” he wrote. “But this face, how­ever im­per­fect, is mine.”

Bor­suk and oth­ers ac­knowl­edge how dif­fer­ent a face is from other or­gan trans­plants. Bor­suk had a spe­cial ef­fects artist make a sil­i­cone mask of the donor’s face, in fact, so that af­ter his was re­moved he would not leave the oper­at­ing room with­out one.

He also in­sisted Des­jardins un­dergo a full year of psy­chother­apy be­fore the op­er­a­tion. Partly to pre­pare for the pos­si­bil­ity of death on the oper­at­ing ta­ble, or that the or­gan would be re­jected by his body later on — but also to steady him for the emo­tional im­pact of hav­ing some­one else’s face star­ing back at him in the mir­ror.

But the re­al­ity is that pa­tients who have been dis­fig­ured by later-life ill­ness or ac­ci­dents — gun­shot wounds, burns, cancer — have al­ready had to ad­just to a “new” face.

In the April is­sue of the AMA Jour­nal of Ethics, face trans­plant pi­o­neer Dr. Ed­uardo Ro­driguez and his col­leagues write about the “dis­cor­dance” pa­tients feel be­tween their “new faces,” the way they look af­ter trauma, and their “real selves.”

Face trans­plan­ta­tion — re­plac­ing a mouth, eye­lids, or nose rather than at­tempt­ing re­con­struc­tion — of­fers them some­thing con­ven­tional surgery can­not touch: “the re­gain­ing of their lost iden­ti­ties,” as the au­thors write.

There have been 41 face trans­plants world­wide, and in al­most all cases, says French sur­geon Lau­rent Lantieri — who has per­formed eight of them — re­cip­i­ents “sup­port very easily, very fast, their new face, psy­cho­log­i­cally.”

“In French, we have two words for the face,” Lantieri says. “Le vis­age, the ex­pres­sion of the per­son, the per­son­al­ity, and la face, which is the anatomy.”

With face trans­plants, “we are trans­fer­ring la face, and that is some­thing we had to make peo­ple un­der­stand. Even if the cos­metic as­pect is not the best, they re­ally in­te­grate quickly.”

We’ve moved away from the early hys­te­ria around face trans­plants, says Pearl. “The surgery has been widely ac­cepted. It doesn’t feel ex­per­i­men­tal in the sense of it be­ing dan­ger­ous, in and of it­self.” Fears about chal­lenged iden­ti­ties haven’t been re­al­ized.

“But it’s hard to re­ally know be­cause the pres­sure on (pa­tients) to tell in­spi­ra­tional sto­ries is so in­tense,” she says, “The pres­sure on this to be this in­cred­i­ble, trans­for­ma­tive thing for which peo­ple are meant to be grate­ful, by which they are meant to be en­no­bled is so pow­er­ful that that’s the story we get.”

Pearl be­lieves “liv­ing with a face, even though it’s not the face you were born with, is much, much bet­ter than liv­ing with­out a face.” But she ar­gues that the sto­ries we tell about such trans­for­ma­tions fail to ad­dress our own prej­u­dices and fears.

“I think we ought to be turn­ing the lens in­ward and ask­ing why it is so hard for peo­ple to func­tion with­out a face,” she says. Look­ing dif­fer­ent shouldn’t be “a kind of liv­ing death sen­tence.”

Two weeks ago, Des­jardins met one of the few peo­ple who might un­der­stand what that’s like — a man who may be­come his sur­geon’s next pa­tient. Like Des­jardins, he is a hunter with a gun­shot wound to the face.

“It’s very weird to meet some­one who has ex­pe­ri­enced the ex­act same thing as you,” says Bor­suk, “who knows what it’s like not to have a face; to be iso­lated.” One man look­ing at the other: this is where I’ve come from. The other star­ing back. “He couldn’t be­lieve that Mau­rice ever looked like him,” Bor­suk says. “It was very emo­tional, for both of them.”

At Wed­nes­day’s press con­fer­ence, Bor­suk ex­plained that Des­jardins is learn­ing how to drink, and how to speak again, “but it will take months be­fore it be­comes nor­mal.” It’s also too early to tell how well he will ad­just psy­cho­log­i­cally.

In a re­cent in­ter­view, how­ever, Bor­suk said, "Your per­son­al­ity comes through in your ex­pres­sions, the way you hold your­self. No mat­ter what skin and bone is put on top, you are still go­ing to be your­self.”

As for how Des­jardins is feel­ing right now? “What is most im­por­tant for face recognition is the eyes. He has his own eyes,” says his psy­chi­a­trist, Hélène St. Jac­ques. And al­though it has been dif­fi­cult ad­just­ing to his med­i­ca­tions, “he is very happy and grate­ful.”

As his wife says of his face trans­plant, “This is done. This is his now.”

COUR­TESY CIUSSS EMTL

Mau­rice Des­jardins gets a first look at his new face a few weeks af­ter his trans­plant.

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