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A Face Transplant Research Study
Johns Hopkins Medicine IRB #NA_00067257
Principal Investigator: W.P. Andrew Lee, M.D.
- What is “VCA?”
- Why is this research study being done?
- What immunosuppression treatment is currently used in face transplants around the world?
- Who is on the Johns Hopkins Face Transplant Research Study Team?
- Why would I need a reconstructive face transplant?
- Am I eligible for a face transplant?
- How many face transplants have been performed worldwide?
- What is face transplant surgery like?
- How do you find face transplant donors? Is that included in the organ donation box on my driver’s license?
- How long will I have to wait for a transplant?
- What is rehabilitation like?
- What is rejection after face transplant?
- What does rejection look like in face transplants?
- How many faces have been lost to rejection?
- Where can I get more information about this research study?
“VCA” stands for “Vascularized Composite Allograft,” and has also been referred to as “composite tissue allograft” or CTA. It is the umbrella term used to refer to transplants composed of several kinds of tissues (i.e., skin, muscle, bone), like the hand, arm or face.
Surgeons and researchers working on the research study at Johns Hopkins are proposing the use of an immunomodulatory / minimization protocol for immunosuppression after face transplant. This protocol is different from most other immunosuppression protocols used to prevent rejection of face transplants in the United States. For more information about this protocol, visit the Immunomodulatory / Minimization Protocol Website.
The standard treatment in human face transplants involve induction therapy with antibodies together with multi-drug maintenance therapy. While Effective, such drug regimens have caused complications like infection and drug toxicity, among others, jeopardizing the benefits gained from otherwise successful face transplants.
W.P. Andrew Lee, M.D., Chairman of the Department of Plastic Surgery and Reconstructive Surgery
Chad Gordon, D.O., Clinical Co-director of Face Transplantation
Amir Dorafshar MBChB, Clinical Co-director of Face Transplantation
Patrick Byrne, M.D., Co-PI and Study Surgeon
Gerald Brandacher, M.D., Scientific Director of the CTA Program
Stefan Schneeberger, M.D., Study Surgeon
Jaimie Shores, M.D., Clinical Director of Hand Transplantation
Damon S. Cooney, M.D., Ph.D., Study Surgeon
Justin Sacks, M.D., Study Surgeon
Patients may need a face transplant, or a vascularized composite allograft (VCA) of the face, if they have had a severe injury and disfigurement from a traumatic injury, burns, or acquired malformations.
The reconstructive transplant team coordinates with the Burn Center at Johns Hopkins Bayview Medical Center to provide care and healing for burn victims. Patients here benefit from having access to top plastic surgeons and a multidisciplinary team of experts trained in treating burn wounds.
The Johns Hopkins Face Transplant team is proud to work closely with Walter Reed National Military Medical Center in supporting our wounded warriors for their best medical options. This collaboration will allow our experts and veterans to explore the possibility of facial transplantation at The Johns Hopkins Hospital.
To be eligible for a face transplant, patients must meet the following criteria. This information is a general list; full eligibility will be determined after meeting with the reconstructive transplant team.
- 18 – 60 years of age
- Facial trauma or disfigurement
- No history of HIV or hepatitis C
- Able to take immunosuppressive drugs
- No history of cancer for at least five years
- Willingness to forgo pregnancy for one year
Since 2005, more than 20 patients have received full or partial face transplants at institutions around the world.
Patients waiting for a face donation can be called into the hospital for surgery at any time. Facial transplant surgery typically takes 12-36 hours, depending on how much and which parts of the face need to be restored. After surgery, you will be placed in a surgical intensive care unit (SICU) for about one week. Once the surgical team feels comfortable with you being moved out of the SICU, you will move to a transplant unit, where you will receive care specially designed for all types of transplant patients. You can expect to be in the hospital for about 3-4 weeks. The amount of time spent in the hospital depends on several things, including the amount of support and assistance you have at home, the distance from your home to the hospital for follow-up care, and any delays that might occur in recovery.
How do you find facial transplant donors? Is that included in the organ donation box on my driver’s license?
Face donation is not included in the commonly used driver’s license organ donation registry. Facial donation requires a special and sensitive consent process with donor families. For Johns Hopkins patients, this process is done through specially trained and experienced coordinators from the Living Legacy Foundation of Maryland, the organ procurement organization for the state of Maryland (with the exception of Charles, Montgomery and Prince Georges counties, which are covered by the Washington Regional Transplant Community).
In addition to matching a donor to a recipient based on tissue and blood tests, selecting a donor for a facial transplant must also involve careful emphasis on matching skin color, skin tone, gender, ethnicity/race, and the size of the face.
Once you are approved for a face transplant, you will have to wait for a matching donor to become available. This can range from a few weeks to several months. The donor must have matching blood and tissue types as well as matching skin color, skin tone, gender, ethnicity, race and size of the face/head.
Face transplant patients should be prepared for extensive rehabilitation, which can last from four to six months. Some parts of rehabilitation may be required for life. The goal for rehabilitation is for the patient to regain function and movement so that he or she can participate confidently in daily activities. The functional duties of the face include speech, communication, smiling, eating and drinking, blinking, and emotional expression. Medical providers involved with rehabilitation may include the following:
- Speech-language pathologist
- Physical therapist
- Occupational therapist
- Respiratory therapist
- Social worker / case manager
- Nursing staff
Therapy exercises may include muscle relaxation or stimulation, mirror exercises, facial expression training, speech and swallowing training, re-educating the olfactory system, and more.
Rejection refers to the body’s immune response towards the newly transplanted limb. Believing the tissues to be “foreign,” the body’s natural response is to attack and can occur within days to months after transplant. A special scoring system to monitor VCA rejection was established in 2008 (Cendales et al).
Rejection can appear as a rash that could be spotty, patchy or blotchy. It could appear anywhere on the transplant and is usually painless. As rejection almost always appears first in the skin, patients and their caregivers are encouraged to carefully watch for the signs and report to the physician for timely biopsy and treatment. Unlike internal organ transplants, it is easy to detect and monitor signs of rejection in the face. This allows for early medical intervention.
No patient taking his/her immunosuppression drugs on time and as advised has lost a transplanted face.
For more information about the Johns Hopkins face transplant research study, contact the study’s Reconstructive Transplant Coordinator at (410) 955-6875. If you get an automated message, please leave a voice mail with a telephone number and a good time to contact you.