In December 2008, medical history was made in the United States when the first-ever partial face transplantation—a near-total face transplant—was performed at the renowned Cleveland Clinic in Ohio. The focus of the operation, Connie Culp, was mutilated years earlier by a shotgun blast to the face. The successful outcome of the face transplantation procedure—which lasted 22 hours and involved eight surgeons—has put those surgeons in the spotlight. Among them is Daniel Alam, MD, who was the primary microvascular surgeon on the case.
Alam is a facial plastic surgeon and head of the Section of Facial Aesthetic and Reconstructive Surgery in the Head and Neck Institute at the Cleveland Clinic. In addition, Alam has been in practice for 8 years and is dual boarded, by both the American Board of Facial Plastic and Reconstructive Surgery and the American Board of Otolaryngology and Head and Neck Surgery.
In the first installment of this two-part series of articles—published in the January 2010 issue of PSP—we spoke with Alam about the events that led up to the surgery, including donor selection and preparing the patient emotionally for the procedure. In this second and final installment, Alam discusses Culp’s recovery from surgery and subsequent (and exhaustive) follow-up, as well as ethical issues that have cropped up around face transplantation.
In August 2008, Alam was asked by his colleague, Maria Siemionow, MD, PhD, DSc, the primary investigator of the Face Transplant Research Protocol, to write the specific operative plan for the surgery for a patient who was missing her midface.
|Figure 1. Frontal (left) and lateral (right) preoperative images face-transplantation patient Connie Chulp of Ohio, whose injuries were caused by a shotgun blast. PHOTOS COURTESY OF DAVID W. KIM, MD, FACS|
By September 2008, Alam had created the 35-page step-by-step instruction manual of how to do a transplant on this patient. As Alam explains, “Maria had done the legwork, got the board approvals, and was the driving force behind the project. I was asked to plan and detail the specific surgery of the patient because of my expertise in facial plastic surgery. I authored this protocol, and then in December we did the surgery.”
The patient’s original injury was a shotgun wound to the face. The then-40-year-old woman was injured in an attempted murder-suicide in 2004. Both she and her estranged husband, the shooter, survived. He is serving a 7-year sentence for the crime. She was left with the middle of her face blown off, and has had to endure two-dozen ineffective reconstructive surgeries over the past 5 years in an attempt to rebuild her face. The protocol for facial transplantation at the Cleveland Clinic was considered a last-resort surgery for her, Alam says.
PSP: Discuss the patient’s post-surgery recovery.
Alam: At about a year out, she is first really starting to get more feeling back in her face. We purposely did not hook up any sensory nerves. The majority of the feeling she has in her new face is because her new face transmits to her old face underneath it. You are better off not hooking up the sensory nerves, but instead letting the patient’s own nerve endings grow into it. And even though you don’t get optimal nerve endings with that, at least you do get a detailed map in your brain as to where things are coming from. The nerves that were left in her face are growing into the new flap.
|Figure 2. Three-dimensional reconstruction of the patient’s preoperative bony skeleton, frontal view.|
If you had actually hooked the nerves up, you would run into a situation where the entire thing would feel like one structure. In other words, if you touched her nose she would feel her teeth, for example.
The advantage of the motor nerves is that they begin to branch inside her face already. So, we took the specific nerves to make her smile and hooked them up. That can be done more precisely, whereas brain connections to sensory nerves can’t be done as precisely. Because of that, it is better to not do them because you are better off not giving them an abnormal sensation.
The nerves and muscles to open and close her jaw, the nerves and muscles to her tongue, are all uninjured. Relearning how to eat and talk was not an issue for Connie because she had the basics of this functionality intact. If we can provide a “front door” to the face, it just allows everything else that was normal on the inside to work like it always did. For example, she couldn’t speak because she had no palate, but by giving her a palate she was able to speak. Just by giving her a nose, she got back her sense of smell.
PSP: What else is critical for her successful recovery?
Alam: There is a lot of additional recovery for a face transplant patient. That is why it is important for a patient to be local [because] all the people on the care team need to see her. It wouldn’t make sense for a patient to come to us from Germany for an operation like this. Connie [lives] about 100 miles away, and she comes for postsurgical visits at least once a month.
There are so many doctors involved in Connie’s recovery. I am the surgeon whom I can liken to the bride or groom the day of the wedding, but the people who are in the marriage are our transplant doctors and our immunologists and our infectious disease doctors. These are the people who, on a daily basis, follow her and have been following her for the last year. I keep track of where she is, but it really is a team process and without all of these other players on the team she would not be doing as well as she is doing. She currently does some physical therapy, but that will start more when she gets more function in her face.
|Figure 3. The tissue composition of the donor allograft is illustrated from the frontolateral view (left) and the posterolateral (right).|
PSP: What are the next steps for this patient’s recovery?
Alam: She is not complete in her reconstruction. Once the extra gland tissue is removed, she should look a lot more like a normal person. She doesn’t look normal yet because she has another surgery, which I hope we can perform for her early in 2010. She won’t look like she used to look, either, but that wasn’t a goal of this surgery
The fundamental process is what I call the “grocery store test.” If we can get her to where she can go into the grocery store and people won’t necessarily notice her, than that would be a miracle.
In the next month or 2, we will do a secondary surgery to remove extra glandular tissue that was transplanted. She had so many failed reconstructions before, she was actually quite challenging.
Probably the vast majority of the time I spent planning for her was studying very detailed blood vessel maps. We examined angiograms and other tests, figuring out what blood vessels we could use to do the face transplant.
|Figure 4. Schematic diagram of the complete allograft shown in right three-quarter view.|
We would intentionally transplant the donor parotid gland in order to protect the nerves, so they could be optimized to preserve function; and transplant the donor submandibular gland, so that we could preserve the blood supply. This extra step and extra set of tissue was transplanted as a safety net, so that we didn’t incidentally damage any of the blood supply or nerve supply in the new face.
What happens when you put this on Connie is that she already has her own parotid gland and submandibular gland, so in a sense it’s an extra layer. When you see her pictures, you see extra “jowelness” hanging on her face—it’s not extra skin, it’s really extra gland tissue and it is well documented. This was planned and well thought out to do the first surgery safely. Now that a year has gone by and all of the face has integrated and all of the blood supply has integrated, we can now safely go back now and remove it.
PSP: Are you pleased with the result?
Alam: I look at it as a job partially done right now. I am looking forward to getting in there with the team and doing the second surgery. I am excited to see the potential it has to offer other people. I don’t think you can look at anything you do and take pride in anything in life unless you see it reach a conclusion. We are not done yet, so while I am thrilled with the progress the final judgment awaits the conclusion.
PSP: What is the future for this kind of surgery?
Alam: You can’t necessarily use one patient as a learning point for something. There are a few things that we realized. For example, the original protocol that Maria [Siemionow] had written was based on doing the first patient as someone who had had a large number of reconstructions, so the transplant would be viewed as a “salvage” surgery. I’m not certain that’s the right approach, meaning that if you’ve done 10 other reconstructions and they’ve failed, and you do a transplant and it fails, then you have fewer backup procedures to bank on.
|Figure 5. Seven-month follow-up photographs of the patient.|
On the other hand, if you do a transplant and if it fails upfront, the worst-case scenario is that you can always remove the face and you haven’t lost anything or burned any bridges for autogenous sources for transfer. These are suggestions and ideas that we are bantering about as a team for what makes an ideal candidate. It would be very naïve to draw conclusions from one case. No institution is going to likely do 10 of these; it could be years before we do our second one. We are going to have to rely on all of the doctors everywhere who are doing it, as well as get together so we actually create enough case studies to learn from each other.
I think that we’d have too much hubris and self-importance to think that from one case we’d be able to draw definite conclusions. I have my own ideas and inklings like that, but it’s going to require us all working together, maybe us establishing a registry where all the cases are logged, all the complications, all the positive outcomes, so that anyone who is potentially interested in doing a transplant at other institutions can log onto one registry. This is one of the challenges we have ahead.
PSP: Will procedures like this become more commonplace?
Alam: Since we did ours, there have been five others that most people don’t even know about. The truth is that this is no longer going to be front-page news. I hope it will get more commonplace, because I think the end point is that we don’t have an option for these people. There is no way we can really put people together from these types of traumatic injury patients. I think we are working out the kinks. The indications are strong enough, and I think there is a very bright future for this type of surgery.
|Figure 6. The potential outcome is shown here schematically in an artist-rendered modification.||Figure 7. A photographic projection of the potential final outcome after completing a future debulking procedure.|
PSP: How many have been performed?
Alam: This was the fourth-ever face transplant and the first in this country. Since ours, there has been a total of eight now.
With each procedure, we are learning more about certain important structures. We were the first to transplant the palate, sinuses, and bone structure. On the other patients, [the surgeons] just transplanted skin and surface structures. As more get done, we will learn more.
This April at our international meeting, the International Facial Plastic Reconstruction Surgery meeting, I will be on a panel with the doctor from Boston and the French surgeon, so I am optimistic and excited to sit with them and be able to discuss some of these cases—not the individual cases, but the field as a whole.
I believe that kind of communication will be the next step. We are looking to put our minds together and look into what are we learning as a group and where we are heading. We want to create a standard of care, to create options for our patients. Hopefully, as we do these, the next time someone reads one of our articles and the next person will say, “I learned these things from that person, and I can do it better.”
If I were to do another transplant, I’m certain we could do it in half the time because of things we learned during the first one. We have all the skill sets right now. I hope that one day we can do the transplant and our patients will not have to be on immunosuppressants. If we get a scientific advance on that front, then the ethical obstacles to the transplantation would be far less of an issue.
PSP: Are there donor ethical issues to be considered?
Alam: We have a special transplant coordinator specialist who works with the organ-procurement organizations. She had a very defined script and an appropriate way to approach potential families who might be interested.
After the donation process was done, this individual who is specifically trained to talk about facial transplantation—all of its pros and cons and who is well-versed in all of this—would go to the family and say there is a potential option for your loved one to donate a portion of his or her face to help a person with a highly traumatic injury. Would you be interested in this? After that, there is the full protection of the donor anonymity, appropriate management of the donor’s body, all of those other issues are addressed and discussed with the family in detail so they know exactly what would happen to their loved one during and after the procedure. And they have full rights and responsibilities of how they would want their postinteraction with the world to be.
See also “Do It To Me One More Time” by David W. Kim, MD, FACS, in the February 2008 issue of PSP.
Our patient’s family has chosen to be anonymous. Our job is to give them a formal discussion of what this really involves, what would be transplanted, and what issues of identity transfer would be. We also have to make sure that we don’t detract away from the donor donating other organs.
Our discussion always takes place after the discussion about the donation of the other organs is complete, and is completely independent.
PSP: What about the recipient ethical issues?
Alam: From the standpoint of the recipient and ethics, there are some defined risks that come with this surgery. The patient is going to be at a higher risk for end-organ problems and for developing cancers from immunosuppression. There is a risk of rejection and infection, and other things.
From all the transplantations we have done over the years, we know some of these things. The answer as to whether this is the right thing to do is that someone has to have an injury so severe that [on] balance the injuries far outweigh the risks.
When Connie says, “I don’t know if it’s worth living the way I am, and I’m OK that there is a risk I may get cancer 20 years from now because that is 20 years that I’ll be living,” that brings up ethical issues.
We really need to weigh these issues. There is still an issue as to who is the right patient for this procedure. We are just barely scratching the surface of the appropriate ethics and appropriate decision-making process.
Amy Di Leo is a contributing writer for PSP. She can be reached at email@example.com.