There are now official rules that govern face and hand transplants, but that doesn’t mean having the words “organ donor” on your driver’s license will automatically sign you up.
The Organ Procurement and Transplantation Network, the nonprofit organization under contract with the federal government to allocate organs, has been facilitating face and hand transplants for years. But without a formal policy in place, the process has been difficult, according to Dr. Sue McDiarmid, who chairs the organization’s Vascularized Composite Allograft Transplantation Committee.
The new rules, which go into effect July 3, will treat face and hand transplants like other organ transplant in the hopes of streamlining the process and boosting the number of procedures nationwide.
“There are more of these procedures being done in the United States,” McDiarmid said, explaining the need for an official policy that clarifies the consent process. Now, “if there appears to be a potential donor that is interested or has stated ahead of time that they specifically would be interested in donating… we can go forward with that.”
Registering to be an organ donor is not enough to constitute consent for this kind of donation, McDiarmid said. If an organ donor wants to donate their hands or face, that donor or their next of kin must give "explicit consent" to do so. Since organ donor registries are run by individual states, those states may develop mechanisms for getting this additional consent in the future.
Like any other organ donation, the face and hands must be harvested immediately. But experts have come up with ways to honor a family's wish to have an open casket, McDiarmid said. For face donors, a mold can be used to create a mask for funeral proceedings, and a prosthetic hand can be used for hand transplant donors.
Since the first face transplant in 2008, there have been at least seven face transplants nationwide, McDiarmid said. And since the first hand transplant in 1999, there have been eight double hand transplants and 14 single hand transplants, she said.
Face transplant recipients in the United States have included Charla Nash, a Connecticut woman who was mauled by a Chimpanzee in 2009 and got her face transplant surgery in 2011. Another notable recipient was Carmen Blandin Tarleton, who underwent a face transplant in February 2013, six years after her estranged husband attacked her with lye, blinding her and leaving her disfigured.
"The donor and her family have given me a tremendous gift making a significant difference in my quality of life at the daily level," Tarleton said a few months after her transplant. "They graciously relieved a significant amount of my physical pain and discomfort."