Meet the Patients
Miracle Baby - Jackson Vaughan and His Family Defy the Odds
Jackson Vaughan and his mom, Jenny, in clinic with Dr. Chris Dvorak and dinosaur
Jenny told herself she was being paranoid. Jackson had a runny nose. Everyone in the family—her husband, Jeff, daughter, Ali, and she herself—was recovering from the flu. But that weekend, sensing something not quite right, she and Jeff brought Jackson to a walk-in clinic in the Central Valley, where a doctor ran his fingers over the child’s stomach and assured them it was nothing. Maybe a little gas.
It began like that, with a misstep and a stumble, then suddenly, a diagnosis that plunged the Vaughans into the rarefied world of pediatric cancer. The diagnosis was hepatoblastoma, a rare liver cancer that affects only children, almost all of them younger than three.
By the time Jackson and his family returned home to Bakersfield after nearly eight months at Lucile Packard Children’s Hospital, they had built friendships with nurses and doctors, respiratory therapists, social workers and chaplains on almost every unit of the hospital.
Jackson, a little boy in love with dinosaurs, would undergo weeks of chemotherapy, around a dozen surgeries, two hotly debated liver transplants and one near-death experience.
In the oft-repeated words of the medical staff, he would be their “miracle baby,” his family one of the most admired families to walk through Packard’s plate glass doors.
“In oncology, we see the spectrum of how people respond to stress and tragedy,” explains Claire Twist, MD. “When you see a family that has the strength, compassion and dignity to handle crisis, it inspires people. Because none of us know how we would respond in that situation.”
Though Jackson is only three and a half years old, his story has all the properties of an epic: despair, grace, tenacity, love, medical bravura and sheer good luck.
“Get That Thing Out of Me!”
It was the Monday after Thanksgiving when Marcia Kreisl, RN, coordinator of Packard’s liver transplant team, first saw Jackson, curled up in his grandmother’s lap just outside Clinic C.
“He was white, so pale and anemic, with that cancer look,” Kreisl recalls. “I just knew this child was really sick. His grandmother, she’s a nurse, she knew it too.”
The medical team had only a small window in which to work. Hepatoblastoma is a fast-growing tumor, and when it comes back after chemotherapy, it’s with all engines roaring.
In Jackson’s case, the tumor was positioned smack in the center of his liver, affecting both lobes and entangling all the important blood vessels. It wouldn’t help to merely cut or resect part of the liver. His only chance was a liver transplant.
But first there were some crucial questions: Had Jackson’s cancer metastasized to his lymph nodes? Was that a spot on his lung? And what about the vena cava and the blood vessels running through his liver? Were they diseased?
If the answer to any of these questions was yes, Jackson would be disqualified for transplantation—a rationale his father refused to accept.
“This tumor had shrunk all the way down!” says Jeff Vaughan. “Jackson was back, he was eating full blast. It was like a miracle. And to think—my God!—that we had come a month away from his dying…”
A biopsy of Jackson’s lung proved that the cancer hadn’t metastasized. The lungs, lymph nodes and vena cava were given a clean bill of health. Jackson was put on the transplant list, and the Vaughans went home to wait. On March 29, the call came: a portion of a 23-year-old cadaveric liver was available, if they wanted to come in.
Jackson playing at LPCH
They had the car packed in 16 minutes. Jeff’s parents began driving in from Wyoming, while Jenny’s parents and sisters gathered from around California. At midnight on March 30, Jackson was wheeled into the operating room.
The transplant went well enough, Carlos Esquivel, MD, PhD, reported to the family nearly eight hours later. It was a long, laborious operation. Dr. Esquivel had had to excise the old blood supply and graft a whole new set of vessels to ensure that they were disease-free.
By the next morning, however, signs emerged of a developing infection, and doctors brought Jackson back to the OR for a wash-out. The following morning, they brought him back again.
The liver had turned black. “Nonviable,” pronounced Dr. Esquivel, who immediately removed it from Jackson’s body and put the child on CVVH, or continuous veno-venous hemofiltration, a kind of dialysis that keeps fluids moving and removes toxins.
It was a desperate act; now Jackson was back on the transplant list. The longest Packard—or any hospital—has managed to sustain a child without a liver is four days. Within hours, it became clear to the support team in the PICU that Jackson wouldn’t last even that long.
He was so yellow, according to Gil Urquidez, RT, he almost “glowed in the dark.” His neurological condition was especially troubling. To Kaaren Peterschmidt, RN, MS, he showed all the hallmarks of brain death: fixed and dilated pupils, no gag reflex, no response to noxious stimuli, no blinking to corneal stimulation.
Still, the liver team pressed for another CAT scan.
“We all wondered why they would give him another liver,” acknowledges Peterschmidt. “I’ve seen so many children who were retransplanted unsuccessfully. But here’s the one in a million. In this case, their guess was right.”
It wasn’t so much a guess as a calculated risk. “Liver coma is not the same as other kinds of coma,” says Kenneth C. Cox, MD, chief of Pediatric Gastroenterology, Hepatology and Nutrition.
“One of the functions of the liver is to remove toxins, and when they accumulate in the brain and blood it can lead to coma with encephalopathy. The dilemma is how much is irreversible and how much is permanent. People assume that once you have these hallmarks, you have brain death. As a liver specialist, I feel different.”
At 9 p.m., less than 12 hours after his liver had been removed, Jackson went into cardiac arrest. As Dev Desai, MD, ripped open the staples on his abdomen to determine the source of the bleeding, Christopher Dvorak, MD, jammed syringes full of blood into his body.
After 10 minutes of performing nonstop heart compressions, Kamyar Hedayat, MD, the PICU fellow who was running the code, came close to calling it quits.
But then he looked up and noticed a photo that Jenny had taped over the rails of her child’s hospital bed earlier that day. There was Jackson, pure attitude, growling and baring his claws like the most fearsome dinosaur. Dr. Hedayat decided to keep going.
Finally, in an act of desperation, Dr. Desai jabbed a needle of epinephrine straight into Jackson’s heart. It worked.
The code had lasted 36 minutes.
“I was shouting, ‘Come on, Jackson!’” remembers Jeff Vaughan, who was watching the entire scene with Jenny, her head buried in his chest, just outside the doorway. “And all of a sudden a cheer goes up. ‘Yea, he’s got a heartbeat!’
“I was expecting them to say, ‘We saved him!’ Instead they said, ‘We are so sorry. With the amount of time that’s gone by you need to think about some things really quick. He’s not stable, and if it happens again, you need to think about a DNR order.’”
To the astonishment of many staff, the liver team pressed for yet another CT scan of Jackson’s brain. That night, two full-time nurses were assigned to his room. Jackson remained unconscious, swollen beyond recognition. The morning of April 2, he had one more CT scan. He passed and—as yet unknown to his parents—a donor organ was available: a whole liver from a three-year-old non-matching donor.
Across the street, Marcia Kreisl was working on the insurance paperwork. Blue Cross of California had questioned the decision. With the death of a non-matching heart recipient at Duke University Medical Center still fresh in the public mind, the insurance company was reluctant to accept Packard’s decision to use a non-matching donor.
The hospital’s rationale: young children—unlike adults—will often accept non-matched livers.
As Kreisl typed up the protocol, the phone rang. It was Dr. Esquivel. The decision was ultimately his to make, and he was wrestling with what to do. What, he wondered, did she think?
“Well, you know, Dr. Esquivel,” she said, “Jackson’s favorite movie is Jurassic Park. And any kid who loves that movie gets my vote.”
Her paperwork complete, Kreisl walked over to the PICU. “And you could just feel the pressure in the air,” she recalls. “Dr. Twist was there, Dr. Dvorak, everybody who had had any contact with the family. It was eerie. When someone came out and announced they were coming for Jackson, it was very emotional. People cried.”
Three days after his second transplant, Jackson was extubated. As the tube came out, he growled, “Get that thing out of me!” As willful as ever.
A week later, he was feeling pretty spunky. His parents took him back to the PICU, and as they stood off to the side, the little boy skipped across the yellow and blue tiles, past the nurses station. Peterschmidt stared in wonder; Jackson ran up and hugged and kissed her. Lia Brenner, RN, hurried out of a patient’s room, stopped in her tracks and cried.
Jackson Vaughan at a party for LPCH staff
“You don’t want to look like you’re showing off your kid who’s doing really well to people who are going through such grief,” explains Jeff Vaughan.
They ran their idea by Chris Dong, MSW. Yes, Dong urged. Celebrate life. People need to see this.
Jeff’s sister, a former caterer, put together tables of food—marinated vegetables, dips and dinosaur cookies. Pots of hydrangeas adorned the patio off 3 West and 60’s rock ‘n’ roll— Jackson’s favorite music—filled the air.
“You just have to remember to celebrate life while you have it,” says Jeff Vaughan. “Whether he makes it or not, I want to make sure this kid has a good day today. I’m not going to let cancer take that away from me. This was an affirmation. The future for us is uncertain, Jackson’s future is uncertain, but today is a party —and that’s our current philosophy.
“Now we’re back in Bakersfield where it’s 106 degrees, and even that’s part of the fun. The kids are running in the sprinklers. Life is good. It’s really good.”
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