“She was just a wonderful little girl.”
Chris Truitt smiled remembering the child whose birth and life were nothing short of a miracle. Alyssa Truitt was diagnosed with a severe brain condition. She defied expectations that she would never talk or walk or even survive. But she did, for two treasured years.
“There’s so much that goes on in your head when you lose a child. We wanted to do whatever we could to try to help another set of parents, another mom another dad from having to go through what we were going through,” said Truitt.
Chris and his wife donated their daughter’s organs and were so moved by meeting the little girl who received Alyssa’s gift of life, they publicly encouraged others to do the same.
He even left his career as an emergency medical technician and went to work for a tissue recovery service in Madison, Wisconsin, from where he spoke with CBS4 Chief I- Team Investigator Michele Gillen.
“I realized I needed to do something more than just promote it, I needed to become involved in the industry to help other folks,” Truitt said.
He had no idea the world he was about to enter; the big business of tissue donation would become, he said, so disturbing that he would eventually speak out against the entire industry.
“Tissue banking is kind of like the wild west. There’s no real sheriff in town,” said Truitt.
The I-Team found that many organ donors do not realize that when they agree to be an organ donor, such as when you obtain a Florida Driver’s License , they are automatically consenting to also be a tissue donor. That means that their tissues, muscles, skin and bones can be harvested. The demand for it is huge and so is the business.
“The key phrase was maximize the donation, which meant not just take everything that you possibly can, but take everything that you can see,” a disturbed Truitt said.
The tissue agency Truitt worked for ultimately went into business with RTI Donor Services, a part of the Florida-based tissue processing giant RTI.
The company turned down the I-Team’s request for an interview because of pending litigation.
RTI is being sued by Karen Delray and dozens of others whose loved ones bodies were cut up without permission by a now convicted ring of tissue traffickers that then shipped tissue and bones to RTI, among other processors.
Because some of it was decayed, diseased, or improperly screened, the FDA recalled thousands of pieces processed by RTI and distributed across the country.
“I was in shock,” said Stephanie Berardini, a Denver wife and mother for whom the recall did not come soon enough. She was alerted through a letter from her periodontist that she might have been exposed to an infectious agent during gum surgery, in which donor bone was used.
“I received a letter about six months later from my periodontist that said this tissue and bone could possibly be tainted,” she said. The letter suggested she be tested, if she wished to do so.
“I’m happily married, raising children and now all of a sudden I am going in to be tested for syphilis and AIDS. I was devastated,” said Berardini.
At the Centers for Disease Control there is concern over the burgeoning business of tissue harvesting, legal and illegal, the vulnerability of the current system and potential risks to recipients of infected tissue. How big is that risk?
“We can’t answer that question, “said Dr. Matthew Kuehnert Director, of the office of Blood, Organs and other Tissue Safety at the CDC. “We know that there are risks. We don’t know the level of risk because we don’t have a surveillance system to track problems with tissue. So we are concerned about the problem.”
Dr. Kuehnert said tissue donation needs to be treated as carefully as blood donations. He and his team had pioneered a pilot project to show how surveillance and tracking can be improved. Funds are needed to implement it nationally, a step he is passionate to see to fruition because, “When a tissue is recovered from a donor to where it’s implanted into the recipient there needs to be tracking at every stop and that is not happening now.”
Currently, if a patient gets sick from suspect tissue or bone, there is a good chance it will go unreported by doctors and hospitals.
“They are not required to report to the CDC. They are not required to report to anyone. That is a big problem,” said Dr. Kuehnert.
Truitt, who said he left his job in the industry but not the cause, holds onto the hope that donating the gift of life can be a gift for all.
“We’ve got to fix this. We can’t stop donation. But we have to fix it,” he said.
Click Here for more information about organ and tissue donation and to change your status.