Jose Mestre has spent the majority of his life slowly disappearing underneath a massive 12-pound facial deformation, which has now rendered him not only blind in one eye but virtually unrecognizable.
Mestre, who is featured on the Discovery Channel's upcoming "My Shocking Story" series, was born with a vascular malformation on his lip. Now 51, Mestre, who lives in Lisbon, Portugal, is wrestling with the decision of how to treat the facial growth, which up until now Discovery says was never removed due to medical misinformation, misdiagnosis, financial problems and religious beliefs.
Is There Hope for Mestre?
While it may difficult for the average person to imagine Mestre's face without the large tumor, plastic surgeons and facial reconstructive specialists told ABC News that while a surgery to remove it would be extensive it is still certainly feasible.
"In general, one can make significant improvements to his facial appearance by removing the tumor and reconstructing the area where the tumor was," said Dr. Andrew Wexler, the president of the American Society of Maxillofacial Surgeons and member of the American Society of Plastic Surgeons. "But removing the tumor may not restore symmetry to a person."
There likely will still be evidence of the tumor after the reconstruction, said Dr. Wexler, due to the tissue and bones that have been consumed by the malformation for so many years.
"The tumor itself can cause changes in the size of the facial bones or in the facial structure because the increased blood supply [that flows to a tumor] can lead to increased growth in facial tissue," said Dr. Wexler, who has not treated Mestre. "There may be a facial palsy."
Vascular tumors are congenital, and doctors say are not entirely uncommon. But more often than not, children who have them get them removed at a very young age. It's also possible to have a vascular tumor that does not grow as large as Mestre's did.
This type of vascular tumor removal does come with risks, said Dr. Wexler, who added that determining the type of blood vessels within the tumor is key in this sort of situation. The bigger the arteries involved, the more extensive the surgery will be.
And, similar to Mestre's loss of vision, these tumors can have significant effects on people's nerve functions – like the ability to smile, as well as more serious afflictions like heart and lung problems – even after they are removed.
This sort of operation takes hours, according to several plastic surgeons, who were unwilling to estimate exactly how much this kind of treatment would cost.
Religious Beliefs vs. Medical Treatment
Mestre's religion – he is reportedly a Jehovah's Witness – is another reason he may have been hesitant to treat his facial growth.
Jehovah's Witnesses' interpretation of the Bible prohibits taking blood from anyone – causing them to refuse to undergo surgeries requiring blood transfusions.
"Our perspective is pretty straightforward and clear – if the surgery involves the transfusion of blood or a major component of blood (such as plasma) then we look as it as contrary to what is stated in scripture," said J.R. Brown, the spokesperson for the Jehovah's Witnesses World Headquarters in New York. "If it does not involve the transfusion of blood then we look at it entirely in terms of a personal decision."
When asked what a Jehovah's Witness would do if a surgery was a life or death situation – or in Mestre's case, significantly life-changing – Brown said that the scripture still disallows blood transfusions.
"When one becomes a Witness [not taking blood] is a belief that you are taught and something you agree to and say you will do," said Brown. "Now if that same person changes his mind due to the stress of surgery, then we view that person as someone who has made the decision to no longer be one of Jehovah's Witnesses. That means they've disassociated themselves."
Brown added that the Bible tells fellow Jehovah's Witnesses to essentially ignore those who disassociate from the religion in passages that instruct followers "not to say a greeting and not to take a meal and to treat him as a man of the nations."
"It's not to personally punish someone but the reason the scripture says that is to hope that the person seeks repentance and wants to become a witness once again and be reinstated," said Brown.
Jehovah's Witnesses Spur Medical Breakthrough
With more and more Jehovah's Witnesses seeking medical treatment that will not conflict with their religious beliefs, doctors told ABC News that bloodless surgeries have increasingly become an option – and perhaps a safer one at that – for everyone, and not just those with religious limitations.
"There are better outcomes in a lot of ways when you avoid blood transfusions," said Dr. Rick Selby, a transplant surgeon at the University of Southern California University Hospital. "It's not just a Jehovah's Witnesses' thing. We've developed a strategy that is widely used now for non-witnesses which prevents having to give any blood products at all."
Selby is referring to a method referred to by medical professionals as "cell salvaging," which essentially takes a patient's own blood out, keeps it in the operating room, and then gives it back to the patient, avoiding a blood transfusion from another person and also not calling on waning blood-bank resources.
In these situations, however, it's important to wager just how much blood will be lost during surgery and determine if it will exceed the amount of blood that can be taken from the patient himself. In the event that a patient might bleed out or a trauma situation arises, a patient unwilling to take a blood transfusion would die.
Performing bloodless surgeries – while they may have been developed and honed to serve the needs of Jehovah's Witnesses – are commonly misconceived as "impossible," said Dr. Patricia Ford, the medical director of the Center for Bloodless Medicine and Surgery at Pennsylvania, who trains other doctors around the country to perform these types of surgeries.
"[Jehovah's Witnesses] want care – the common misconception is that they want to die, but they don't, they just don't want to break their religious convictions." Dr. Ford told ABC News. "They want the same care everyone else gets just without blood transfusions."
Finding doctors who are precise and skilled enough to do these types of surgeries is not only important but can also be very difficult, something that Dr. Ford hopes to see change as more doctors realize the benefits of these surgeries.
"Almost everything can be taken care of without blood transfusion, meaning people can go through almost every type of surgery, medical treatment or procedure without blood transfusion," said Dr. Ford. "But you have to seek out the right doctors."