Losing Face, Gaining Hope

"I said, 'What? What? Is he dead?' He said, 'He's not dead, but he's not doing good. He's had an accident with his gun'."
"I just fell down on the floor."
"I saw his eyes [bandaged in hospital] and I said, 'Yes, it's him."
"I'm always afraid of making a mistake. There are so many different types of medication. I have to pay close attention to what I'm doing. It's really a 24/7 job."
Gaetane Desjardins, Notre-Dame-de-la-Salette, Quebec

"I think if  you want to talk medically, things have been a success. We might have to put in different plates [holding the jaws in place]. It's not a big thing, but it's frustrating."
"His life before is not like his life now, with all the medical visits. It takes some time to adjust to it. He's impatient; I'm impatient. We want it to be perfect right away and unfortunately that's not how it works. It's going to take time to establish a normal life. It's not just in this case -- it's in all [face] transplants."
"I am close to my patients, but with him, it's another level. Maybe it's a bit too close? But that's on me."
"I know he'll get it back [jaw control]. It's like when you have a cast on your wrist: If you don't move your wrist for a month, it's going to be stiff."
"I think that we have a great public [health care] system and I think it works really well, but the problem with some of these transplant patients is most of them don't live near a transplant centre,"
"They have to leave their homes, get in their car, pay for parking, pay for gas, pay for medications, which aren't always covered. And so it ends up being a quite expensive year for these patients." 
Dr. Daniel Borsuk, plastic surgeon, Montreal

"We had to basically dismantle all the work we had done over the years."
"This was, for  us, kind of a grief. We had to dismantle all that we had done to be able to offer him a new face."
Dr. Akram Bahai, ear-and-nose surgeon, face-transplant team member

Desjardins, pictured here before his surgery in 2018, was severely injured in a 2011 hunting accident. (Jérôme Voyer-Poirier/Radio-Canada)

Maurice Desjardins had decided back in January 2011 to clean his hunting rifle, last used hunting caribou in James Bay the month before. He had stored it still loaded. Then on January 10, he removed the bullets before cleaning the rifle. "I cleaned it, I oiled it, and it was too oily", he said recalling how the gun had slid out of his hands and onto the garage floor, the butt shocked into jarring the firing pin. One bullet had remained in the rifle, when he thought he had emptied it of all ammunition.

What ensued was what is termed an "avulsion" injury; the bullet carving a pathway through his face hitting his jaw, mouth, nose -- with the entire anterior portion of his face pulled away. He considers it a miracle that he survived. The second miracle was enacted seven years later when surgery provided him with the face of a man who had been declared brain dead. A man whose pancreas, heart and liver went to others awaiting organs to preserve their own lives, including that of a dying baby.

His wife Gaetane happened to be off with friends for a holiday in Cuba, and she flew home directly she was informed by a police call that her husband was in intensive care in hospital. Nine months later her husband was discharged. It took a year-and-a-half before he could speak and then only by pressing the tracheostomy opening with his fingers. While he recuperated as much as was conceivable, his roofing business dissolved. People stared at the man with 'no face' when he left his house in the small village.

His destroyed face was left with two apertures where his nose should be and a mangled, puckered mouth he was unable to close. And without the tracheostomy -- a surgical hole in his throat he would be unable to breathe. Attempts at reconstruction were futile. And for seven years this is how he lived. Last May, then-64-year-old Maurice underwent a 30-hour surgical procedure which had nine surgeons -- who had practised on cadaver heads for two years -- perform the process that united the faceless man with a new face.

Dr. Daniel Borsuk and Desjardins share a hug. After a year of ups and downs since the surgery, the two men have grown close. (Charles Dagenais/Radio-Canada)

The team, led by Dr. Daniel Borsuk, was comprised of over 100 medical, nursing and support staff. Montreal's Maisonneuve-Rosemont Hospital saw the team of surgeons essentially surgically remove  a brain-dead man's face to place it over Maurice's faceless skull. A one-piece neck, chin, mouth, cheeks and nose including the upper face bones, the maxilla, midface and jaw. Maurice was able to retain his own eyes and ears and forehead.

Now, a year following that surgery, his new face is beginning to move. Sensory nerves are in recovery mode. Maurie can move his lips. He can feel if his cheeks are pinched. He can identify the sensation of heat or cold if it touches his face. His mouth remains in a wide-open position. He was taught facial exercises in rehab. People no longer stop to stare at him in the rural Quebec village by the Lievre River where he and his wife live. "I'm still the same guy", he says.

Maurice and his wife travel regularly to Montreal for follow-up medical care. Maurice feels his new face has given him a second chance. Because of the non-rejection drugs, however, problems have arisen. And the many drugs he must take with his new condition are not all medications covered by insurance. The couple recently posted a GoFundMe page. Which elicited merely $100 in response up to the present.

Gaétane Desjardins said she had to give up her job, because taking care of her husband is too demanding. (Charles Dagenais/Radio-Canada)

A feeding tube still supports him because he cannot yet consume a full meal through his mouth; it will take further adaptation. The anti-rejection drugs leave him vulnerable to infections, to cancer, to diabetes and potentially a shortened lifespan. He underwent emergency surgery for diverticulitis, in response to infected pouches forming on his colon wall one of which which ruptured, spilling the contents of his intestines into his gut. Gaetane rushed  him to hospital in Montreal.

"He wasn't answering me anymore; he wasn't talking anymore. I was driving fast"; fast enough that she was stopped by police just outside Montreal. "I said 'Please, come with me, take me the way, bring my husband to the hospital, he's going to die". A $325 ticket for speeding resulted. "I called intensive care, I called the general surgeon and they operated on him that night", Dr. Borsuk recalled. And for the time being Maurice wears a temporary colostomy until his bowels can be repaired in three to six months' time.

Now, however, the man with a new face is slowly regaining strength. He no longer consumes alcohol. "He didn't want to live anymore, that's why he was drinking, and Dr. Borsuk said, 'You have to stop everything. Everything'," pre-surgery, Gaetane explained. Maurice had lost 32 kilograms after the transplant. When asked if he still considers the transplant a godsend, he responds: "Ah, oui."

Maurice Desjardins and his wife, Gaétane, have dealt with major infections, hospitalizations and financial stress in the past year. But they say it's been worth it. (Charles Dagenais/Radio-Canada)

Serendipitous HIV Treatment

"[That was] an improbable event [finding a stem cell transplant donor with a gene mutation conferring natural resistance to HIV]."
"That's why this has not been observed more frequently [the type of measure taken to address patients with HIV in a search for a cure]."
"There is no virus there that we can measure [with Dr. Gupta's London patient]. We can't detect anything."
"[My London patient is] functionally cured [and] in remission, [but] it's too early to say he's cured."
"This was really his last chance of survival. It’s been a long journey. He’s been very sick for a long time. Obviously the idea of cure and remission has created a certain level of anxiety and hope mixed in with each other."
"We’ve been talking about this for a few years now. It’s been a difficult journey to offer someone this hope and then say we don’t know it’s going to work. So even stopping his HIV treatment – he had to really think about it and it took him a while to finally do it. It’s difficult because you’ve got to put your faith in what doctors are saying to you."  
Dr. Ravindra Gupta, professor and HIV biologist, University College London

"Although this is not a viable large-scale strategy for a cure, it does represent a critical moment."  "The hope is that this will eventually lead to a safe, cost-effective and easy strategy ... using gene technology or antibody techniques."
Anton Pozniak, president, International AIDS Society 

Timothy Ray Brown, pictured Monday in Seattle, was the first person thought to have been cured of HIV infection, more than a decade ago. Now researchers are reporting a second patient has lived 18 months without any sign of the virus following a stem-cell transplant. (Manuel Valdes/Associated Press)

In a first, two men have now been freed from any detectable signs of HIV, after ground-breaking medical treatment. One, a man in Germany, known as the 'German patient', and identified as Timothy Ray Brown, and another man not yet identified, known as the 'London patient'. Timothy Ray Brown, an American, had been treated in Germany, and now is 12 years post-transplant, remaining free of HIV. Up to the present time, he was the only individual thought to have been successfully cured of the HIV virus, the precursor to AIDS.

Now a second man's transplant "shows the cure of Timothy Brown was not a fluke and can be recreated", observed Dr. Keith Jerome of Fred Hutchinson Cancer Research Center in Seattle, Washington. There is hope that on the basis of what has been observed and learned with this latest transplant, scientists may come up with a less complex approach to be more widely useful. Quite simply, not everyone with HIV could be treated with a complicated and dangerous transplant.

This second case, where the intensive procedure of a stem cell transplant succeeded in freeing the 'London patient' from HIV, was published by the journal Nature online. The case is set to be presented in Seattle, at an HIV conference. Diagnosed with HIV in 2003, the man in question started on drugs to control the infection in 2012. Coincidentally he developed Hodgkin lymphoma the same year and this led him to agree to undergoing a stem cell transplant to treat the cancer.

The doctors treating this man felt their London patient might benefit from a 'bonus' beyond the treatment geared toward the cancer eradication, and were hoping that possibly the transplant might also result in a cure of his HIV condition. The search began for the 'right kind' of donor. And this is where fortune stepped in, when a donor was discovered with a gene mutation conferring natural resistance to HIV. 

"The limitations of bone marrow transplants for [a] cure are that there is significant toxicity from the procedure, which include adverse effects from the chemotherapy that must obliterate the person’s existing immune system."
Dr. Joseph P. McGowan, medical director, Northwell Health HIV Service Line Program, Manhasset, NY

It is known that about one percent of people descended from northern European backgrounds inherit the mutation from both parents, making them immune to most HIV infections. And this double copy of the mutation was precisely what this donor possessed. The London patient's transplant has altered his immune system, now possessing the donor's mutation, making him essentially HIV-resistant.

Stock photograph, Getty Images

After undergoing the procedure, the man with his double dose of HIV and cancer had to decide to stop taking the HIV drugs. When that happens, invariably the virus speedily returns, generally within two to three weeks' time. But not this time. And now, after a year and a half without his daily dose of drugs to stave off HIV, no trace of the virus returning has appeared.

The process of a stem cell transplant begins with radiation or chemotherapy for the very direct purpose of damaging the body's immune system, to welcome the replacement immune system that the stem cell transplant effects. AIDS also disrupts the natural immune system leaving the sufferer vulnerable to all manner of deadly infection and cancer; in effect the stem cell transplant's need to extinguish the old immune system to make place for the new one creates a similar, albeit transitory effect.

In the case of the earlier German patient, Mr. Brown, his leukemia which had triggered his transplant and eventual cure of his HIV, returned, necessitating that a second stem cell transplant be undertaken, eventually leading to success. The German doctor who had treated Mr. Brown, Dr. Gero Hutter, spoke of the new case as "one piece in the HIV cure puzzle".