Undying sibling revelry

SPRINGFIELD — The gray T-shirt with the green lettering gives him away.

“World’s Best Kidney Donor (and brother),” it says across Derek Hadley’s chest.

If not a fact, if not something that is officially bestowed on any transplant donor anywhere, it’s nonetheless how Jeff Hadley feels.

“I’m eternally grateful to him,” says Jeff, 33, an accountant at Levi Strauss & Co. in Eugene, sitting on the couch with his younger brother in Derek’s Springfield home, the one their parents bought for Derek in 2011. “I don’t want to say I was surprised. I didn’t know which way it would go, whether he wanted to (donate his kidney) or not. But I’m eternally grateful. I’ll always be grateful.”

That Derek Hadley, 31, was willing to donate one of his kidneys to his only sibling, who was born with a physical disorder that left him with only one functioning kidney, is not uncommon from one outlook.

A full sibling, after all, provides the best chance for a compatible donor match.

Derek, however, is autistic.

He was diagnosed with the neurodevelopmental disorder, characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors, when he was 2.

Asked if it is unusual for someone with autism to donate a kidney or any other organ, Dr. William Bennett says: “Yes, and that was what worried us the most.”

Bennett is a nephrologist and medical director at Legacy Transplant Services, a department of Legacy Good Samaritan Medical Center in Portland, where Jeff Hadley’s transplant surgery took place on Oct. 26.

“Is this person capable of giving us informed consent?” Bennett says he and the rest of the transplant team asked themselves. “So, we went to great lengths to make sure this was his free will, and that he understood what he was doing. And he did.”

Grim diagnosis

“It was really pessimistic,” says the brothers’ father, Don Hadley, a safety consultant at SAIF in Eugene, of Derek’s 1987 autism diagnosis.

Derek was a healthy if somewhat unusual child the first two years of his life, Don Hadley says. But his lack of speech and some other odd behaviors led his pediatrician to request testing.

As the years went on, there were challenges, and more than a few for Hadley and his wife, Florence. Derek could be inflexible and egocentric. There was a need for strict routines.

If they were going out to dinner and stopped at the gas station first, “(Derek) would just lose it,” says Don Hadley, who grew up in Eugene and graduated from North Eugene High School in 1977, “because that’s not the order you do things.”

Not in Derek’s world. Not then.

Older son Jeffrey, on the other hand, was never a problem as a child. As an infant, he slept through the night. His disposition was “happy and content,” Don Hadley recalls.

But Jeff Hadley, who grew up in Springfield where he graduated from Thurston High School in 2000, would face physical challenges, as well as teasing as a child, because of something called “prune belly.”

The official term is abdominal muscle deficiency syndrome. In short, Jeff was born at Sacred Heart Medical Center in Eugene with no stomach muscles.

The disorder can cause a chain reaction of other birth defects that last into adulthood, Don Hadley says, including kidney damage, “a bladder the size of Cleveland,” undescended testicles and club feet.

The most serious of these has been the kidney damage. Testing at birth concluded that one of his kidneys was basically nonfunctional, and the other only functioning at about 50 percent.

“I was just worn out”

There were certain physical things Jeff couldn’t do. He remembers kids in school doing the President’s Challenge fitness test — push-ups, pull-ups, sit-ups, running — and thinking: “I can’t do a sit-up.”

There were other physical challenges, including a diagnosis of scoliosis, sideways curvature of the spine, partially caused by lack of abdominal support, when he was 15. That required surgery and the placement of a titanium rod in his back.

And there were bladder infections and fatigue as his kidney function deteriorated.

Jeff Hadley, who today lives in Springfield with his wife, Sarah, and their boys Jackson, James and Lucas, 4-year-old triplets, was about 20 and attending the University of Oregon when his kidney function “took a big dip,” he says. He was on vacation with his parents and Derek in Canada. “I was really tired. I was just worn out.”

Over the next decade or so, his condition would worsen. His one functioning kidney was only at 20 percent or 25 percent by the time he turned 30.

In late 2014, his Springfield nephrologist, Dr. Shalin Sanghvi, told him it was time for a transplant. “It was an inevitability for my whole life,” Jeff Hadley says.

He would undergo months of blood tests and body scans earlier this year at Legacy Good Samaritan Medical Center in Portland to get approved as a kidney recipient. One of those body scans would reveal something that now seems a blessing in disguise: testicular cancer. If not for the need of a kidney transplant, it may have been caught too late.

As it was, Jeff underwent two surgeries for that and a couple of rounds of chemotherapy.

Compared to the need for a new kidney, though, Jeff says the cancer was “a non-issue, a blip.”

But it delayed the transplant surgery about six months.

“Jeff is important to me”

As Jeff Hadley was undergoing tests to approve him as a kidney transplant recipient and dealing with cancer, Derek was undergoing testing to be his brother’s donor.

His candidacy, and his willingness, were not something anyone expected — or sought. Not initially.

His parents, as well as other family members and friends, had applied to be the donor. But not wanting to worry him, no one had even told Derek his brother was ill.

It was during a trip to Arizona and back in November 2014 that Don and Florence told him the news. The three of them had gone to Arizona to pick up a new motor home. On the drive back, there was a problem with the instrument panel’s motherboard. They stopped and spent the night in Sacramento. That’s when they told Derek.

To his parents’ astonishment, his response was: “Do I need to get a blood test?”

This brought tears to their eyes. Then they explained there was much more to it than that.

“They tell me about Jeffrey on that (trip),” recalls Derek, who graduated from Springfield High School’s special education program in 2004 and today works three days a week, making nameplates for the state, at the Pearl Buck Center in Eugene.

He has surpassed all of his family’s expectations, and then some, and is mostly independent these days, taking the bus to and from work.

“He needed a kidney so bad,” Derek says. “I tell them, ‘I want to see if I can donate on that.”

But Don and Florence didn’t think Legacy Transplant Services would go for it.

They went to Derek’s house one night and told him that if he really wanted to do it, doctors would need to ask him a lot of questions to make sure he understood what he was doing.

Questions like:

Do you know what kidneys are?

Do you know what surgery is?

Do you realize there is risk in any surgery?

Derek answered most of the questions just fine, but that last one threw him.

Don Hadley had looked up mortality rate statistics for kidney donors. He found one that said the chance of dying during kidney removal surgery was about 1 in 3,000.

“So, there’s a chance, a very small chance, that you could become very sick or even die,” Don Hadley told his son.

Derek jumped off his couch, hands outstretched, and exclaimed: “Whoa, whoa, whoa  …  I could die!?”

Derek, who about once a year takes a trip through TRIPs Inc., a company that provides travel opportunities for those with special needs, had held off on booking his latest, to Walt Disney World in Orlando, Fla.

“All he heard was, ‘I could die,’  ” Don Hadley recalls of that conversation. Derek did not understand the concept of risk and probability, his father says.

Sorry, he told his parents, it was too much to handle. He asked them to book the Orlando trip. There would be no need for any donor testing in Portland.

Two days later, Don and Florence’s phone rang. It was Derek. He’d changed his mind.

“I want to take the risk,” he said. “Jeff is important to me.”

A visual message

But his parents still weren’t convinced he understood. They figured he still thought the chance he could die was 50/50. And they wanted him to be comfortable with what he was about to do.

So, they went to his house again. This time, knowing he was always a good “visual learner,” they brought a graphic they’d made.

They had taken a photograph they found online, of a man in a black suit, and reduced it in size so they could fit 150 of the images on a sheet of paper. Then they made 20 copies to represent the number 3,000.

But on one of the pages they substituted an image of a woman in a bright pink dress for one of the man in the black suit, to show what 1 in 3,000 looks like.

“OK, that’s not bad,” Derek said when he saw the graphic.

Thus began his four-month screening process at Legacy.

Derek went through many interviews and tests: blood, X-rays, EKG, CT scan.

And, finally, a 45-minute interview with a neuropsychologist.

The conclusion: Derek knew exactly what he was doing. “Derek was pretty highly motivated,” says Bennett, the Legacy transplantation director and nephrologist. “We kept giving him obstacles, and he kept pushing for it.”

A “perfect match”

Derek Hadley was not only the best match for his brother, he was what is known in transplantation speak as a “perfect match.”

The blood of potential donors is tested for six different types of tissue markers called human leukocyte antigens.

The more tissue markers that match, the better the odds are the recipient’s immune system will not reject the new organ.

A perfect match happens when all six sets of markers are identical in recipient and donor.

Still, everyone was nervous when Oct. 26 came. “The eternal pessimist in me said ‘Something’s going to go wrong,’  ” Jeff Hadley recalls.

And for the parents?

“Mortified,” Don Hadley says. “It was horrible. It’s completely out of your control.”

Dr. John Ragsdale performed the laparoscopic nephrectomy on Derek, slipping one of his kidneys out through a small incision.

And Dr. Kevin McEvoy performed the transplant surgery on Jeff.

“After I got out of the recovery room, I said, ‘Where’s Jeff?’  ” Derek remembers. “And they said, ‘Your Jeff is good.’  ”

And Derek, too, is just fine, Bennett says.

And as long as the donor is healthy to begin with, the remaining kidney will grow larger and provide at “60 to 70 percent of two-kidney function,” he says.

The transplant went so well that instead of having to stay in Portland for an anticipated month, Jeff was home in two weeks. And he’s needed lower amounts of drugs (taken to decrease the chance his immune system will attack the new organ) to suppress his immune system than expected, Bennett says.

Asked now why he did it, Derek says: “Because Jeffrey, my brother, needed a kidney so bad.”