Thicker Than Blood

Two Alumni: One Unbreakable Bond.

Story by Jane Dunbar.

“You Could get the surprise of your life”
– From “Live Your Life”, by T.I., 2008.

IT HAD BEEN a glorious day on the Hill, and cadet spirit—set aflame in the maroons and golds of a trademark Vermont autumn—burned brightly. Later the same evening, as close to 1,000 students packed into Plumley Armory for the annual Regimental Ball, that same spirit crackled through the crisp twilight air like fallen leaves under the heels of their high-gloss oxfords.

Lauren Musso ’11 at Naval Hospital Camp Pendleton, California, this past August. She completed her active-duty military service on August 31. On September 1, she transitioned into service with the Navy Reserves. (Courtesy of Naval Hospital Camp Pendleton.) Today, Bryan Stegehuis ’09 enjoys a full, healthy life at his home in Windsor, New York. (Chuck Haupt Photography.)

Lauren Musso ’11 at Naval Hospital Camp Pendleton, California, this past August. She completed her active-duty military service on August 31. On September 1, she transitioned into service with the Navy Reserves. (Courtesy of Naval Hospital Camp Pendleton.) Today, Bryan Stegehuis ’09 enjoys a full, healthy life at his home in Windsor, New York. (Chuck Haupt Photography.)

 

NU’s Regimental Ball on October 18, 2008.

It was October 18, 2008: a watershed moment for Norwich seniors as they symbolically passed through the receiving line, under the arc of swords, and into the next phase of their lives. But neither Bryan Stegehuis ’09, nor Lauren Musso ’11, were thinking much about the future as the deejay cranked the volume on the evening’s first song. Instead, they fully intended to embrace the present: storming the dance floor to the opening lines of T. I.’s “Live Your Life.”

And so they danced—two friends whose paths would soon diverge: his, to Goodfellow Air Force Base in Texas, where he would train as an intelligence officer and go on to serve as the Mission Intelligence Coordinator for the Remote Piloted Aircraft team; hers, back to the classroom, where she would complete her nursing degree before commissioning into the Navy in June 2011.

Having met two years prior at the intersection of their social circles, the pair hoped they would keep in touch once Stegehuis graduated. What they couldn’t have known on the dance floor that night was that the fiber of their friendship had already been woven into a tapestry that would later be measured by the Fates.

A Devastating Diagnosis

Montgomery, Alabama, in June is nature’s version of cowboy coffee: wisteria blooms, dark roasted and ground with organic rot, drip-brewed into a viscous concoction of dank and sopping air. And there were bugs. Lots and lots of bugs.

Still, Stegehuis—who was temporarily stationed at Maxwell Air Force Base for aerospace training in 2010—could not, for the life of him, understand why he was so itchy. “The sensation is almost indescribable,” he says, grimacing at the memory of the angry red bumps that had erupted up and down his limbs. “At times, I thought I’d scratch right through my skin.”

When on-base medical staff pegged chiggers as the likely culprit, Stegehuis was relieved. With some hydrocortisone cream and a little perseverance, he figured he could outlast the persistent little parasites: at the end of the month, he would complete his course and return to Creech Air Force Base in Nevada, where he’d recently been assigned to the 432nd Operations Support Squadron as a security manager.

Then he started vomiting, profusely.

“I was feeling so sick,” says Stegehuis, “but the doctors had no explanation. So I just kind of dealt with it, hoping everything would resolve once I got out of Montgomery.”

Except it didn’t.

Back at Creech, by then noticeably jaundiced and fatigued, Stegehuis consulted Dr. Philippa Augustin, his active-duty primary care physician out of Mike O’Callaghan Military Medical Center at Nellis Air Force Base. Under the care of a specialist, gastroenterologist Dr. Jonathan Ricker, he commenced a months-long game of diagnostic whack-a-mole: just when it seemed Dr. Ricker had identified and knocked back the cause of Stegehuis’ symptoms, they reappeared with a vengeance. “At first, we thought it was gallstones,” Stegehuis says, “so I had a few procedures to clear those out. When that didn’t work, I had my gallbladder removed. And when that didn’t work…well, it was frustrating. I just wanted to feel better.”

Finally, on January 3, 2011, Dr. Ricker presented a definitive diagnosis: primary sclerosing cholangitis (PSC), a rare and chronic liver disease that gradually destroys the bile ducts and leads to cirrhosis.

“There is no cure for PSC,” the doctors gently explained to Stegehuis. “Your only hope is a liver transplant.”

“I was stunned,” Stegehuis says. “I never once thought I could have had anything worse than the common flu.”

By that October, his dream of piloting the MQ-1B Predator or MQ-9 Reaper reconnaissance drones unrealized, Stegehuis was medically retired from the Air Force.

Others Before Self

Meanwhile, assigned to her first billet at Navy Medical Center San Diego (NMCSD), Musso had quickly become immersed in a career of service for which she had seemed destined all along: tending to soldiers on the Wounded Warriors floor as a Navy nurse.

Growing up in Queens, New York, the eldest of two children born to Francisco and Jaqueline “Jackie” Musso, Lauren “was always the kid who would give up her coat, or her lunch, if someone needed it,” Jackie says. “She’s wired for compassion.” That compassion intensified one clear September morning in 2001, when a young and impressionable Musso witnessed, up close, the suffering and loss as the Twin Towers fell—and the bravery and grace of the first responders. “That event lit the fire inside me to join the military.”

Throughout their transplant preparations and recovery, Stegehuis and Musso enjoyed moral support from many of their Norwich friends. Visiting them near Lahey Clinic shortly before the surgery (l-r): Owen Humphreys ’09, Stegehuis, Musso, and Mike Cleary ’09.

It also fueled her desire to heal. In high school, as the city tended its own post-9/11 wounds, Musso worked as an emergency medical technician. When her boss—a Norwich graduate—mentioned the Navy Nurse Candidate Program and inquired whether Musso had considered it, something clicked. “The suggestion perfectly addressed my two desires for the future,” she recalls. Later, visiting Norwich with her father, she found herself hooked. “I spent a weekend captivated by the Corps of Cadets, and experienced how welcoming the students were. Despite the fact that it was snowing in April—that never happens in New York!—I immediately felt I belonged.”

Her decision to enroll, and the lesson she first learned as a rook to “always do the right thing, even when no one is looking,” foreshadowed what would happen a decade later. Without the first, she never would have met Stegehuis. Informed by the second, she made a decision that would save his life.

 

“Suck It Up and Drive On”

Settled back home in Windsor, New York, after his medical discharge, Stegehuis sought constructive ways to occupy his time. Qualifying for a liver transplant depended on his MELD (Model for End-Stage Liver Disease) score and, despite how poorly he was feeling, his score was too low. “My care team at Syracuse VA Medical Center had sent me for a workup to see if I might be a candidate,” Stegehuis explains. “But my MELD was a twelve on a scale of zero to forty, with forty being total liver failure. In that range, there’s a real possibility that transplantation would actually decrease my quality of life. My only choice was to wait things out.”

A CrossFit devotee and accomplished power lifter while in Nevada, Stegehuis believed that keeping in shape would extend his prognosis—so he resumed working out at his high school gym. He also volunteered as a strength and conditioning coach for the football and track teams, saying that the activities “gave me a sense of purpose, something to focus on besides my health situation.”

In the following years, with his MELD score hovering around twelve, Stegehuis quietly battled the symptoms and complications of his disease: persistent itching, profound fatigue, nausea, bile duct stones, inflammations, and blockages that required more than a dozen invasive procedures to clear out. Save for his immediate family and closest friends, few—not even Musso—knew anything was wrong. While she and Stegehuis had maintained Facebook contact, time and distance prevented anything deeper than what Musso describes as “an acquaintanceship.”

“We had this pattern of falling in and out of each other’s lives through social media,” she recalls. “We’d congratulate each other on good news, comment on a photo here and there, but that was about the extent of it.”

In July 2013, when Musso deployed from NMCSD to Kandahar, Afghanistan, as part of Operation Enduring Freedom, Stegehuis took note. There, she spent nine months as an Intermediate Care Ward (ICW) nurse at the NATO Role 3 Multinational Medical Unit (MMU)—the primary trauma receiving and referral center for all combat casualties in the southern part of the country. It was stressful and exhausting work. During that time, as Stegehuis endeavored to boost Musso’s morale with positive messages and the occasional care package, their friendship enjoyed a brief renaissance.

Not once did he mention his illness.

“As a junior, I was a cadre for incoming rooks,” he explains, “and I had to set an example: in the face of adversity, you suck it up and drive on. Self-pity doesn’t change your circumstances, and often makes them worse.”

When Musso returned to NMCSD in March 2014, she remained unaware of her friend’s dire health. Soon thereafter, engrossed in the routines of work and daily life, she fell back out of touch with Stegehuis.

Two years later, that would change.

A Close Call

Have I fallen into a well? Darkness surrounded him and fear choked away his breath.

But Bryan Stegehuis wasn’t at the bottom of a well. He was in the intensive care unit at SUNY Upstate University Hospital in Syracuse. It was July 2016.

Just a few days earlier, as a direct consequence of his silently progressing PSC, he had suffered a life-threatening internal bleed: his liver had become so inflamed, and his portal veins so compressed, that he had developed esophageal varices (enlarged veins) that ultimately ruptured. After six blood transfusions and an emergency TIPS (transjugular intrahepatic portosystemic stent) procedure, he awoke on a ventilator.

“That was my closest call,” Stegehuis says. It was also, he hoped, a qualifying event to be listed on the National Donor Registry. Although Stegehuis’ MELD score remained unusually low—at fifteen following his hemorrhage—doctors urged him to begin the medical workup for transplantation. “They knew how long the wait could be, and wanted me to be ready,” Stegehuis explains.

According to the American Liver Foundation, as of 2015, more than 17,000 pediatric and adult liver patients were listed on the registry. The shortage means that as many as 1,500 candidates die each year awaiting transplants. Managed by the United Network for Organ Sharing (UNOS), a national nonprofit that matches deceased organ donors with transplant candidates, the registry prioritizes potential liver recipients by medical urgency, among other factors.

Conversely, living donor liver transplantation (LDLT) effectively circumvents the National Donor Registry, its priorities, and wait times. In this procedure, surgeons extract a healthy donor’s right lobe (about 40 to 60 percent of the liver) and transplant it into the recipient, completely removing the diseased liver. In both patients, the liver fully regenerates, typically returning to normal size and function within six weeks.

The first LDLT was performed on November 27, 1989 at the University of Chicago; now, each year, hundreds of patients undergo LDLT at one of 73 specialized centers across the country. The prognosis is excellent: according to statistics released by Columbia University Medical Center, the three-year survival rate for adult recipients approaches 97 percent.
Stegehuis’ doctors, aware that the country’s largest LDLT program was just over 300 miles away at the Lahey Clinic in Burlington, Mass., advocated for the procedure. “But I’m not good at asking for help,” he says. “I never once approached anyone about donating.”

As it turns out, he didn’t need to.

“All About Stegehuis”

A few days after Stegehuis’ hemorrhage, Lauren Musso spotted a photo posted on Facebook: her friend, tubes and wires snaking out from all directions, laid up in what appeared to be the ICU. Concerned, she fired off a message. “Pardon my asking, but is everything okay?” Stegehuis reluctantly confessed to his PSC. Shocked by his prognosis, Musso processed the news for a few weeks. Then she shot him another question: “What’s your blood type?”

He chuckles at the recollection. “I honestly thought it was because she was a nurse and just had an interest in that kind of thing.”

Musso had an interest, all right: she intended to become a living donor for Stegehuis. “I wouldn’t say I felt ‘called,’” she explains. “But I’d always known that if someone were in need, and I had an opportunity to donate, I would step up.”

Nurse practitioner Alicia Parrott, who would become Musso’s transplant coordinator at Lahey, leverages some perspective. “There is a real risk for liver donors—a one in 200 chance that they will die during, or after, the surgery. When I realized Lauren intended to donate for a friend, not a relative, I went home to my husband and said, ‘I’m sorry; the only person I’m ever giving my liver to is one of our kids!’”

“Lauren is a rare breed of selfless,” Parrott continues. “Throughout this entire process, everything has been about Bryan. It’s never been about her.”

Unfazed by the risks, Musso quietly forged ahead with her initial compatibility testing. “I knew the chances of Bryan and me being a match were fairly slim,” she says. “I didn’t want to give him false hope.”

Bound by Fate

As it turns out, in almost every critical measure of compatibility, Musso was a perfect match. She shares Stegehuis’ blood type, A-positive. Her liver proved to be the appropriate size, which is uncommon: because liver size correlates with a person’s height and weight, female donors typically do not match well with male recipients. And later, during a more comprehensive evaluation, Musso’s doctors discovered an exceptionally rare anomaly. Instead of two portal veins (the vessels that carry blood to the liver), Musso had three—and two of them led to her right lobe. This, explains Parrott, meant that surgeons would not have to split Musso’s sole portal vein and then reconstruct it for Stegehuis. “That third vein was perfectly positioned; it was unreal.”

Musso’s gift to Stegehuis, it seemed, had been written in the stars.

The Surprise of His Life

Surgery pre-op, January 30, 2017.

Two weeks after her evaluation, Musso told her friend she intended to donate part of her liver for him. “I was blown away,” he recalls in a voice thick with emotion. “It was the surprise of my life.”

“It took a while for me to convince him I wasn’t joking,” Musso reflects.

The next four months crawled by at a snail’s pace. As Musso completed a battery of physical and psychological tests, and submitted reams of paperwork to secure official Navy approval for her medical leave, she worried constantly about her friend. “Bryan was home and relatively stable, but as a nurse, I knew we were on borrowed time,” she says.

Stegehuis and Musso wander the halls, post-surgery. “I had a tube in my nose because I couldn’t eat anything,” Bryan reflects.

So, she verbally paced out her anxiety, phoning her Lahey and Navy contacts every day, over and over. She called Parrott: Has the transplant team convened? Can we schedule the surgery? She called the Department of Defense Bureau of Medicine, responsible for approving her medical leave: Where is my paperwork? Is it signed? When will it be signed? She called Stegehuis: Hang in there; things are moving along!

“I knew it was possible Bryan might not make it,” she says. “I was trying so hard to get everything done, and felt that if I pushed hard enough, I could expedite the process.”
At one point, Musso even declared to her commander: “If Bryan needs me, and I don’t yet have approved leave, I’m still going. You can charge me with something later, but think of the bad press that would attract!” Soon thereafter, the Navy’s surgeon general offered his signed blessing.

Then, on November 17, 2016, Musso received official approval from Lahey. “And then we waited. And waited. And waited some more. First, it was the holidays. Then it was a
doctor’s vacation. And in the middle of it all, Bryan suffered another serious bleed and they had to push the surgery back another week. It felt as though he and I had run a marathon, only to collapse ten feet before the finish line.”

But they clawed their way across it. Finally, on January 30, 2017—almost six years to the day that Stegehuis received his diagnosis—nurses rolled both friends into the surgical suite, and forever into each other’s futures.

A Perpetual Gift

Musso (second from left) with her transplant surgical team. To her right is Alicia Parrott, the nurse practitioner who served as Musso’s transplant coordinator. To her left are her surgeons, Dr. Mohamed E. Akoad and Dr. Yee Lee Cheah.

Am I in Kyoto? Pagodas emerged from the mist while a gently plucked guzheng sprinkled the air with staccato notes. A woman approached, whispering Japanese in his ear. But Stegehuis wasn’t in Japan. He was emerging, befuddled, from a transplant procedure that had taken three days. “My spleen was apparently gigantic, so they had to remove it first,” he says. “And that exerted such stress on my body that they had to let me rest.” It was an unexpected setback, but recoverable.

Stegehuis’ outcome has been remarkable. After spending two months recovering at Lahey, he left the hospital in March with a fully regenerated liver and completely normal lab results. “I’m still learning what it’s like to feel healthy again!” he says. By April, he had returned to training his athletes.

Musso’s surgery proceeded smoothly—but unexpected post-procedure complications required a lengthy hospital stay: doctors didn’t discharge her until April 9. She eventually returned to a limited work schedule at Naval Hospital Camp Pendleton. “There’s a running joke at Lahey,” she laughs. “If there’s an anomaly, good or bad, it will find me!” Her liver regenerated more slowly than normal—but she and her doctors do expect a full recovery.

Musso’s now-husband, Marine Bobby Barclay, was “one hundred percent supportive” of her decision to donate. During her surgery and recovery, Bobby’s commanding officer granted him a month’s leave. The couple married on July 1, 2017, officiated by Dana Flieger ’11 (center). Lauren now goes by Lauren Musso Barclay.

Would she do it all over again? “Absolutely. No question.” In a tone as soothing as a cold compress on a fevered forehead, she says, “You can’t predict every outcome. As a nurse, I knew that going in.”

For Stegehuis, Musso’s gift is the ultimate symbol of her character, her dedication to being a caregiver, and her friendship. “She’s incredible,” he says. “I will never be able to express how deeply grateful I am for Lauren’s remarkable sacrifice.”

Again settled at opposite ends of the country, Stegehuis and Musso talk almost daily. Their bond, forged at Norwich, cultivated over the years, and sealed with their common, life-altering experience, is now permanent. They will never again lose touch. “I’ve told Bryan that he can never get rid of me,” Musso laughs.

After all, they are now, literally, a part of each other.

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