Haitian dancer, now an amputee, caught between rehab providers

From The New York Times:

PORT-AU-PRINCE, Haiti — Fabienne Jean (pictured), a professional dancer who lost her right leg in the earthquake, hopped on her slim left leg through the dusty General Hospital compound on her way to a very important X-ray.

Once at the radiography clinic, Ms. Jean, 31, wearing a form-fitting black minidress with a chunky lapis-blue necklace, draped herself on the examining table like a fashion model. Then the technician entered and positioned her stump for X-rays bound for New York, where, if things worked out, Ms. Jean would be heading, too.

“Maybe my luck is changing for the better?” she said that day, more than two months after she had survived a raging deadly infection by reluctantly agreeing to an amputation.

But then began a tug of war between two health care providers over who would get to rehabilitate Ms. Jean.

Would it be the big New York hospital whose director of critical care helped save her life five days after the quake? Would it be the small New England prosthetics company whose foundation has been working since to get her up and about? Or would the two organizations find a way to collaborate?

Among Haiti’s thousands of new amputees, Ms. Jean, who was featured in an article in The New York Times in February, has been singled out for special opportunities because of serendipity, news media attention and her potential as a symbol of Haiti’s resilience: if the dancer who almost died rises to dance again, that will resonate, her caregivers believe.

But Ms. Jean’s situation also highlights the way in which many Haitians, like their country, are now dependent on international charity.

As Ms. Jean sees it, this is largely a blessing — “Thank God for the foreigners,” she said — but it can also be complicated and uncomfortable.

The New York hospital, Mount Sinai Medical Center, wants to follow through on its Haiti relief team’s involvement with Ms. Jean by offering her corrective surgery and rehabilitation. The hospital is petitioning the Obama administration to grant Ms. Jean humanitarian parole to enter the United States.

It has also found doctors and lawyers to volunteer their services and a Haitian-American nurse to provide Ms. Jean a home in Brooklyn during her treatment.

The New England Brace Company Foundation, on the other hand, believes that Ms. Jean can and should be treated in Haiti, where she will live.

With its prosthetists preparing to fly to Port-au-Prince to fit her with a temporary new leg this week, the New Hampshire-based group does not want to lose her as a patient, for personal and professional reasons. The foundation wants Ms. Jean’s help in fund-raising, and has considered making her its spokeswoman.

For Ms. Jean, a dancer with Haiti’s National Theater, tragedy has turned into opportunity in a way that dizzies her. During the Jan. 12 earthquake, a stone wall collapsed on her leg. For days afterward, she lay waiting for help in a sea of broken bodies on the grounds of the General Hospital, where Dr. Ernest Benjamin, Mount Sinai’s director of critical care, arrived with a medical team.

Ms. Jean begged Dr. Benjamin, who is Haitian-born, to save her leg, arguing that it was crucial to her livelihood. But it was too late.

“It was not an easy decision to amputate, but she was critically ill and further delay would have cost her life,” Dr. Benjamin, an intensive care specialist, said. “Indeed, despite the amputation we feared that we were going to lose her. She was the first patient to have a seizure after surgery. It was heart-wrenching and we promised ourselves that we would do everything to help her if she survived.”

Not long after her amputation, though, the General Hospital transferred Ms. Jean to a clinic on the outskirts of Port-au-Prince.

That is when Dr. Benjamin lost track of her — and when Dennis Acton of the New Hampshire group found her in a place he described as a kind of “squalid homeless shelter for amputees.”

Moved, Mr. Acton pledged to help Ms. Jean walk — and dance — again. “Fabienne has a great attitude,” he said. “I figured she would be a strong patient who could get back on her feet quickly and be a positive role model to other amputees.”

With a team of New England prosthetists now committed to treating about 50 amputees in Haiti, the Nebco Foundation is a newly incorporated group that solicits donations on its Web site, saying: “No funding is trickling down from the large organizations who have raised over a billion dollars; we need your help to continue!”

The article in The Times on Ms. Jean moved scores of readers to offer help. At the same time, Dr. Benjamin, finding Ms. Jean again through the newspaper article, proposed that Mount Sinai bring her to the United States to continue her treatment, and began preparing a humanitarian parole application.

(The Department of Homeland Security has granted parole for medical reasons to scores of Haitians since the earthquake, Matthew Chandler, a department spokesman, said.)

Learning of Mount Sinai’s initiative, Mr. Acton was initially upset because he had just been counseled by disability experts in Port-au-Prince that their guidelines advocate that Haitians be treated in Haiti.

Indeed, Handicap International, a leading group here, does not approve of sending Haitians abroad for rehabilitation, even though “there is little or no rehabilitation system in Haiti,” Lea Radick, a spokeswoman for the group, said.

Haitian amputees need low-tech prostheses that can be repaired or replaced in Haiti, she said, adding, “The work before us involves building local capacity so that injured Haitians will have access to critical services for the rest of their lives.”

Doctors at Mount Sinai say that Ms. Jean needs additional surgery before rehabilitation. Her stump ends in a thick, scabby scar that is likely to open with friction from a prosthetic limb, leaving her vulnerable to further infections, according to her application to enter the United States.

While Ms. Jean could potentially get such surgery in Haiti, resources are stretched thin, and Mount Sinai is offering her “world-class” medical treatment and rehabilitation, Dr. Benjamin said.

Mr. Acton, after considering this, hesitantly agreed that going to New York might be in Ms. Jean’s best interest. He wrote an e-mail message in late March that he had initially been “defensive (and maybe a little jealous?)” but that “Fabienne will never get the care she needs in Haiti.”

For a brief period, Mr. Acton and Mount Sinai appeared to be working in tandem. He offered to sign an affidavit of support for Ms. Jean to accompany her humanitarian parole application.

But later, he conditioned that offer on his group’s remaining her prosthetic provider, and he said his board of directors was concerned that Mount Sinai was trying to steal a high-profile patient.

The cooperation broke down.

After a frustrating week in Haiti, Dr. Benjamin said that he believed the New England group was impeding his efforts to obtain documents needed for Ms. Jean’s parole application.

The group, he said, while most likely “doing some wonderful stuff,” had made an investment in Ms. Jean that it did not want to lose.

“Her ability to dance again will help them cash in,” he wrote to his colleagues in New York, proposing that they “throw in the towel” on their plan to bring Ms. Jean to Mount Sinai.

Mr. Acton said he would make sure that Ms. Jean got the care she needed. And he added that he resented the implication that his group was exploiting Ms. Jean, whom he said he considered a friend and “an equal partner” with “the power to decide how she wants to work with us in her future career, if at all.”

He added: “I am learning the hard way that the disaster zone is more than just destruction and injured people; it is a complex mix of politics, egos and power plays as well.”

In the end, Mount Sinai decided to keep pursuing permission for Ms. Jean to enter the United States. Separately, Mr. Acton prepared to travel to Haiti with her new limb.

And, in the middle, Ms. Jean, appreciative though stressed, does not want to take sides. But she does want to go to New York for treatment if possible.

She said in Creole: “I want to! I want to! I want to!”