By Brian Grow and John Shiffman
TOWNSEND, Tennessee (Reuters) - Cody Saunders was born in 1992 with failing kidneys and a hole in his heart.
When he died on his 24th birthday, he had endured 66 surgeries and more than 1,700 rounds of dialysis, his parents said. Some days, he hid the pain in upbeat selfies on Facebook. Other days, he shared an excruciating reality, posing in a hospital bed with bandages strapped across his scarred chest.
On his Facebook profile, Cody wrote that he was looking for a girlfriend who will accept “me for me.”
“Y am I ugly,” he posted on Christmas Day 2015.
Cody lived with his parents in an aged motorhome at an East Tennessee campground. When he was well enough, he worked on a farm with his father, feeding cattle, putting up hay, hauling molasses in a dump truck from one barn to another.
On August 2, 2016, Cody died after a heart attack on his way home from dialysis. Too poor to bury or cremate him, Cody’s parents donated their son’s body to an organization called Restore Life USA. The facility sells donated bodies – in whole or by part – to researchers, universities, medical training facilities and others.
“I couldn’t afford nothin’ else,” father Richard explained.
The month after Cody died, Restore Life sold part of the young man’s body: his cervical spine. The transaction required just a few email exchanges and $300, plus shipping.
Whether Restore Life vetted the buyer is unclear. But if workers there had verified their customer’s identity, they would have learned he was a reporter from Reuters. The news agency was seeking to determine how easy it might be to buy human body parts and whether those parts would be useful for medical research. In addition to the spine, Reuters later purchased two human heads from Restore Life, each priced at $300.
The transactions demonstrate the startling ease with which human body parts may be bought and sold in the United States. Neither the sales nor the shipments violated any laws, say lawyers, professors and government officials who follow the issue closely. Although it’s illegal to sell organs used for transplants, it’s perfectly legal in most states to sell body parts that were donated for research or education. Buying wine over the Internet is arguably more tightly controlled, generally requiring at minimum proof of age.
To comply with legal, ethical and safety considerations before the purchases, Reuters consulted with Angela McArthur, who directs the body donation program at the University of Minnesota Medical School. She took immediate custody of the spine and heads for Reuters, inspecting and storing them at the medical school.
McArthur said she was troubled by how easily the body parts were acquired and by the failure of Restore Life to perform proper due diligence.
“It’s like the Wild West,” McArthur said. “Anybody could have ordered these specimens and had them delivered to their home for whatever purpose they want.”
McArthur examined the remains and the documentation included with them to determine how useful the parts would be for medical research. Her review was based on national safety and ethics standards she helped draft for the American Association of Tissue Banks, the American Association of Clinical Anatomists and the University of Minnesota.
She concluded that the medical history Restore Life provided was insufficient, and that the accompanying paperwork was sloppy and inadequate. For those reasons, the specimens did not meet standards for use at her university, she said.
“I haven’t seen anything this egregious before,” McArthur said. “I worry about the future of body donation and public trust in body donation when we have situations like this.”
“RESPECT AND DIGNITY”
Contacted several months after the sales, Restore Life President James Byrd briefly explained his approach to business.
“Organizations like ours are what I consider accountable because, especially us, we have direct contact with the donor family,” he said. “And there’s a certain level of respect and dignity that is involved there because we have that personal relationship with them.”
Byrd subsequently declined to be interviewed or answer written questions. But he emailed a statement in which he criticized Reuters for making the purchases.
“It’s obvious your team at Thomson Reuters has no concern for those that seek help from our organization,” he wrote. “You only wish to hurt those that need help the most.”
Byrd added that Restore Life does good work by supplying body parts to researchers working to cure cancer, dementia and other diseases.
“We help countless people through a wide range of research working with world-renowned researchers,” he wrote.
Whatever good Restore Life hoped to achieve by supplying these body parts, McArthur said, its poor handling of the remains “miserably failed” to serve researchers and the three donors: Cody Saunders and the unidentified man and woman whose heads Byrd sold to Reuters.
McArthur said the relatives of donors, whose intentions are noble during a difficult time, deserve better from the industry.
“People think they are doing the right thing, and they want to fulfill their loved ones’ wishes,” said McArthur, who formerly chaired Minnesota’s body donation commission and serves on the leadership council of the American Association of Clinical Anatomists. “I know they would feel exploited to know that something like this happened.”
Thomas Champney, an anatomy professor at the University of Miami Miller School of Medicine, also expressed alarm at the ease of the sales.
“Human body parts should not be bought and sold in the same manner as used refrigerators,” he said.
Byrd, 50, has been in the body parts business for two decades. An East Tennessee native, the body broker recently was runner-up in a stand-up comedy contest called The Funniest Person in the Tri-Cities, the region surrounding Kingsport, Johnson City and Bristol.
Before opening Restore Life, Byrd directed a nonprofit tissue bank called American Donor Services, then located near Memphis.
For several years, one of American Donor’s chief orthopedic customers was a Texas firm affiliated with a company that distributed bone grafts made in part from human tissue. In 2005, according to sworn testimony in a civil lawsuit, American Donor shifted to a new chief orthopedic customer. The new buyer paid as much as $10,000 per donor, provided a $200,000 line of credit and began managing American Donor’s financial affairs.
Byrd left American Donor Services a short while later, worked briefly for a vascular tissue bank, and then founded Restore Life in 2008. Based in Elizabethton, Tennessee, Restore Life obtains bodies mostly from people in Tennessee, Virginia and North Carolina. In return for body donations, Restore Life offers to pick up the deceased, cremate the unused remains for free and return them to the family.
In 2011, Byrd spoke publicly about Restore Life in a presentation to the commissioners in nearby Sullivan County. Officials there had grown frustrated by the increasing cost to taxpayers of cremating the indigent. According to a recording of that meeting, Byrd explained that he could help the county. He also noted that many families who donated to Restore Life did so for financial reasons: All expenses were covered, including cremation.
“We have become more a service for those indigent and pauper cases that can’t afford a funeral,” Byrd told the commissioners. “It’s a perfect fit for situations where families don’t have the funding or sometimes where it’s left to the county for funding.”
Restore Life’s informal arrangement with Sullivan County to take indigent bodies continues today, county officials said. A few times a month, they said, the medical examiner or other officials refer pauper cases to Byrd for possible donation. At the 2011 meeting, County Attorney Dan Street said a formal arrangement with Byrd was unnecessary because officials were merely referring the indigent to him, without any endorsement implied.
“This company is simply going to come and take these bodies,” Street told commissioners. “We’re simply getting out of the way and letting them do what private enterprise does best.”
Since it opened, Restore Life has grown almost every year, according to the latest available tax records filed with the Internal Revenue Service.
Records show that Restore Life’s annual revenue rose from $49,251 in 2009 to $1.1 million in 2016. Income also increased, the records show. In 2009, expenses exceeded revenue by $1,277. Last year, revenues were $187,884 higher than expenses. The tax records show the charity’s net assets were $354,556 on Aug. 31, 2016, the last date for which records are available.
Byrd lives and works in a Tennessee town where the median household income is $30,000. The nonprofit he operates paid him a salary of $113,000 last year, the tax records show.
Angie Saunders recalls that during her pregnancy, there were no signs of trouble in her prenatal check-ups or ultrasound tests. But when Cody was born on August 2, 1992, he arrived in grave distress.
He was moved from the county hospital to the University of Tennessee Medical Center in Knoxville, where he stayed three months. He was diagnosed with VATER Syndrome, a condition involving multiple birth defects.
Besides the hole in his heart and failing kidneys, Cody was born without a rectum. For the first two years of his life, Cody’s parents said, they fed him through a gastrostomy tube.
Cody had so many dietary restrictions – no milk, no chocolate, no tomatoes, no salt – that he settled on dry Fruit Loops as his go-to meal. For dessert, he took a couple of bites from a stick of butter.
Cody needed dialysis three times a week, four hours per session. Given her son’s needs, his mother couldn’t work much. His father told every employer upfront that his child came first.
“Half of his life, if it wasn’t the hospital, it was dialysis,” Richard said. “I went through a lot of jobs.”
When Cody was about 9 years old, his parents said, he received a kidney transplant that transformed him. It freed him from constant dialysis. He learned to swim and had more time for school.
“I wouldn’t say he was normal,” Richard said, “but at least we wasn’t having to be tied down as much.”
The new kidney lasted a little more than five years, and when it failed, Cody was rushed by helicopter to the hospital for a monthlong stay, his parents said. Dialysis began anew.
At 14, Cody won a children’s art contest. The charity, American Kidney Fund, flew him to Washington, D.C. On a contest questionnaire, he listed his favorite things, including gym class, coloring, and riding his bike. His favorite actor was Scooby Doo. His role models: his dad and his mom. When he grew up, Cody wrote, he hoped to work with his father.
Cody left school in the 11th grade. His parents say he was reading at a second-grade level. He worked on farms as often as he could with his dad, and in the winter they sold firewood. He chewed Skoal tobacco and played pool at a local club. To protect his kidneys and heart, he didn’t drink alcohol. But he didn’t always follow doctors’ advice. He could drink a six-pack of Mello Yello soda in a day, his parents said.
In his final years, Cody grew sad and lonely. His parents noticed, and so did his friends on Facebook. He was weary of the pills, the dialysis, the hospitals and the constant reminders of what he could and could not do, his parents said.
“I think not just his body was tired, but his whole mind was done,” his father said.
“He wasn’t scared,” his mother said. “He was ready.”
Cody’s heart stopped on his birthday, August 2, 2016. Not long afterward, Restore Life collected his body.
ORDERING A SPINE
On August 29, 2016, Reuters reporter Brian Grow sent an inquiry via email to Restore Life’s Byrd. At the time, the news agency knew nothing about Cody Saunders.
To contact Byrd, the reporter used his real name and his Thomson Reuters email account.
“We are seeking pricing, including shipping costs, to procure one cervical spine specimen for purposes of a research project involving non-transplant tissue,” the query said. The term “non-transplant tissue” refers to body parts, such as heads and spines, which cannot be transplanted into living humans.
The request from the reporter provided a delivery address in Minneapolis, a few miles from the University of Minnesota’s anatomy lab. The query concluded, “We look forward to hearing from you.”
Byrd responded about an hour later. “Thank you for your email, I do not believe we have worked with you in the past. How did you hear about our organization?”
“Your firm was referred to us by an industry contact,” Grow replied.
Byrd asked if Grow wanted a full cervical spine – the vertebrae and tissue in the neck, just below the skull. When told yes, Byrd replied that the price would be $300, plus $150 shipping. He attached X-rays, which were described as belonging to a 24-year-old male.
Three days later, Grow accepted the offer.
Byrd replied, “Thank you again for allowing us the opportunity to work with you and your organization.” He added three questions. One concerned billing, and one asked to confirm that the spine should be sent frozen, not thawed. Byrd’s third question was whether the specimen would be used for “medical research or medical education.”
In addition to determining how easy it might be to buy body parts, Reuters sought to assess the quality of the specimens and the documentation that came with them. When the reporter responded simply, “It’s being used for medical research,” Byrd closed the deal.
“Thank you again (sic) the opportunity to work with you and your organization,” he wrote.
McArthur said the Reuters purchase was legal and ethical. No law prohibits such sales, she said, and the news agency was conducting legitimate research. Byrd, she added, broke no laws by selling the body parts. Still, she said, the three questions he asked in his email demonstrated the broker’s focus on completing the sale, rather than on seeking more details about the buyer’s intentions.
That process can include a request by the seller for details about how the buyer intends to use the body parts for research or education.
McArthur said brokers like Byrd who accept donations have an ethical responsibility – though not a legal one – to ensure that body parts will be used in a medical setting for an appropriate purpose. Reuters turned over the remains to McArthur for analysis and safekeeping. But another buyer could have done anything with the human spine and heads, she said.
THE SPINE ARRIVES
On September 27, 2016, a FedEx driver delivered a brown cardboard box to the Minneapolis location where Reuters had leased a mailing address. There, Grow received the package and gave it to a courier who specializes in transporting human remains. The courier drove it directly to McArthur at the medical school.
McArthur immediately noticed problems. She said she found it odd that the outside of the box was not labeled with a customary warning that human remains were inside. McArthur found a pair of one-page documents in the box. One contained the results of a serology test by a reputable company, certifying that the donor was free of infectious disease.
The other page offered a handwritten summary, in layman’s terms, of the donor’s medical history.
“In my experience, I would have expected to see a more robust form,” McArthur said, explaining that most brokers provide precise and detailed medical histories. “It’s very superficial.”
The medical summary contained neither letterhead nor contact phone number, she noted. McArthur also cited inconsistencies in the specimen identification numbers listed at the top and bottom of one of the pages. And she noticed a small discrepancy between the identification numbers listed on the paperwork and a tag attached to a plastic bag covering the spine.
Precise, legible medical history and consistent donor identification systems are critical information for proper medical research, said University of California anatomical services director Brandi Schmitt. The medical history helps the researcher account for variables such as disease or trauma. Clear paperwork and accurate tagging, she said, allow researchers to track specimens in a scientific manner.
To prevent mishaps that could lead to lost or misidentified body parts, Schmitt said, most hospitals and medical schools use modern tracking techniques, including computer-generated metal discs or barcode tags. A label of some sort should have been directly attached to the spine itself, she said, not merely to the packaging.
“Misidentification is a real problem, for sure,” said Schmitt, who coordinates body donation for the University of California’s medical schools statewide. “I don’t think that a handwritten document is your most professional approach. It can lead to human error.”
A week after the spine arrived, Byrd responded to a follow-up email from Grow. Byrd said human heads were available for $300 each. He also offered discounts on knee and foot specimens to free up “some freezer space.” He wrote that his low prices for body parts reflect the company’s “nonprofit public charity” status, adding: “We are looking to just cover our overhead.”
GRIEF AND ASHES
Richard and Angie Saunders said they wanted to bury Cody beside relatives in a nearby cemetery. But Richard, who struggles to read, earns only about $900 a month. Angie, who has long suffered from debilitating anxiety, cannot work or drive. A burial was simply too expensive.
Friends offered to pay for cremation, which typically costs at least $695 in the region. But the Saunders said they felt uneasy about accepting charity from folks they know. So they donated Cody’s body to Restore Life. At the time, Richard said he was grateful for the free cremation the firm promised.
The hardship the family faced is not uncommon among donors, said Martha Thayer, chair of the mortuary science program at Arapahoe Community College in Colorado.
Bereaved families are “vulnerable and are being put in the position of choosing this as an option when they don’t have money,” Thayer said. “The only thing that’s more sad than a person who can’t afford to live is a person who can’t afford to die.”
In Cody’s case, a relative read a donor consent form aloud to his parents before they signed it.
One paragraph says: “I authorize Restore Life USA to obtain all necessary tissue and organs for research and educational purposes. I understand this gift will be used for scientific research, teaching or other conforming purposes and for use in multiple research or educational venues with for profit and/or non-profit organizations that Restore Life USA, in their sole discretion, deems necessary to facilitate the gift.”
The Saunders said they believed this meant that Restore Life would merely remove small skin samples from Cody for medical research, cremate him and then return his ashes. The Restore Life consent form for Cody didn’t disclose that a donated body may be dismembered, as consent forms of most other brokers do.
A few weeks after the donation, a man from Restore Life delivered an urn with Cody’s ashes. Angie can’t recall the man’s name but said he was kind.
“Really nice and understanding,” she said.
The toll Cody’s death has taken on Richard worries Angie. He won’t eat more than a few bites of whatever she cooks and usually refuses to talk about their loss. Richard said Angie isn’t wrong, but he noted he has reduced his smoking, from five packs a day to about three.
On the rusted red-and-white pickup he used to ride in with his son, Richard placed a large sticker on the rear window: “In Loving Memory of Cody Saunders.”
“He was my buddy. He was my best friend,” Richard said. “I keep telling myself I’ll get over it, I’ll get over it.”
In a shoebox inside her motorhome, Angie Saunders keeps four photographs of Cody. In each one, he looks directly into the camera, shades perched over his ballcap. She also keeps a silver urn containing his ashes on the dashboard.
“I didn’t get to hold Cody when he came into the world and I didn’t get to hold him when he went out,” she said. “But he came back to me, so he’s in here with me.”
TWO MORE SPECIMENS
In January, Restore Life shipped a second package to Reuters at the same Minneapolis address. This one contained two human heads: one male, one female. As an upcoming story will detail, Reuters purchased the heads as part of its research into a case in Pennsylvania. There, a human head was found in a wooded area near Pittsburgh almost three years ago.
Again, the specialist courier brought the box to McArthur’s university lab, where she donned protective gear and opened it.
The Styrofoam container inside the cardboard box arrived cracked along two of the outside edges, making it vulnerable to leaks and presenting a potential health risk to anyone handling it, from shippers to researchers, McArthur said.
She also found problems with the paperwork for the male head.
“The area where tissue samples are usually listed – usually with client, sample description, sample ID, type of preservation, and the date and time of preservation – is all blank,” she said.
Likewise, the paperwork for the female head was unprofessionally prepared, she said. McArthur said the documents were so hard to read that she struggled to understand key information any researcher would require, including the person’s medical history.
After the wrapping and paperwork were removed, McArthur found that neither head had an identification tag. A tag is considered critical, McArthur said, to track identity, especially when working with multiple body parts.
McArthur said that she was familiar with stories of casual sales of body parts by brokers, but the sloppiness of this shipment surprised her.
“I don’t believe what I have just seen here should be allowed or should be legal,” McArthur said. “I know that it can be handled in a way that won’t stifle medical education and research. We can do this the right way.”
A SON’S FATE
As is customary in the body broker industry, Restore Life did not include the names of the people who donated the body parts it sold to reporter Grow – just each person’s age and date of death.
Reuters could not identify the individuals whose heads were shipped. But at just 24, Cody Saunders died so young that the news agency was able to identify him after searching through obituaries in southern states.
With his parents’ permission and participation, Reuters hired a forensic lab to perform a DNA test. It confirmed that the cervical spine came from Cody.
In late August, Grow returned to visit Richard and Angie Saunders to tell them what Reuters had learned: Restore Life had dissected their son’s body and sold part of his spine.
For a few moments, Cody’s parents sat silently.
Angie stared into the distance. Richard looked at the ground.
Then Angie spoke. “I thought they was just taking skin samples,” she said and began to cry.
Richard tried to comfort her. “It’s over with, honey.”
“I didn’t want no more surgeries,” she said.
“At that time, we did not have no choice,” Richard reminded her. “But you have to look at it this way: Like you kept saying, if it’s going to help somebody else…”
“I know, I know.”
The couple said nothing more for nearly half a minute. Finally, Richard turned to Angie. This part of their lives was “done and over,” he told her.
Had they known Cody would be dissected, his parents said, they would not have donated his body. Cody, they felt, already had endured too many surgeries during his short life. They didn’t want, or expect, anyone to “cut on him” in death, Richard said.
And yet, he added, “I couldn’t afford to do nothing else, so I felt like that was the best option we had.”
Richard asked whether Restore Life used any other parts of Cody’s body. The reporter said he didn’t know. Brokers typically don’t disclose that information. Richard said he doubted he would seek answers from Restore Life. “I don’t blame them,” he said. But he appreciated learning what happened to Cody’s remains.
“Because we would have never known,” he said.
Angie agreed. “We wouldn’t have had a clue.”
Early this month, in keeping with the family’s wishes and at Reuters’ expense, Cody’s spine was cremated in Minnesota. Grow delivered the ashes to the Saunders family at their home in Tennessee.
(Reported by Brian Grow and John Shiffman; edited by Blake Morrison)