Young patient exemplifies 'indomitable nature of the human spirit'

Courtesy of Lucile Packard Children's Hospital

Peter Hanson, shown here with parents Charles and Katharine Hanson, has benefitted through the years from the complex-care expertise at Lucile Packard Children's Hospital.

Peter Hanson has survived a staggering array of medical challenges, including cardiac failure, a heart transplant, chronic ear infections, a broken leg, repeated bouts of pneumonia and a rare form of cancer.

Still, he leads the conventional life of an 9-year-old boy. He likes to play video games. He has friends and gets good grades at school in Menlo Park. He dashes around enthusiastically during backyard football games with his dad, brother and sister.

"I don't think he sees himself as a patient," said Peter's father, Charles Hanson. True, Peter has developed some unusual skills, such as learning to swallow pills at age 5, Charles said. But he hasn't let that define him. Instead, "he's a normal guy; an 9-year-old boy who gets a lot of help from a lot of people."

Those people are the hundreds of caregivers at Lucile Packard Children's Hospital who have assisted the Hanson family since they first walked through the hospital's doors in 2005. More than almost any other family, the Hansons can appreciate Packard Children's ability to handle complex patients. It has addressed not just Peter's medical needs but also his family's desire to be highly involved in his care, and Peter's wish to be a regular kid.

Peter was born with a congenital heart defect. Soon after his second birthday, his heart began to fail. As he waited at Packard Children's for a heart transplant, his condition became so dire that he was put in a medically induced coma.
"I remember at least one occasion where I had to resuscitate him doing chest compressions," said David Cornfield, MD, chief of pulmonary and critical care medicine, who has cared for Peter during many of his stays in the pediatric intensive care unit.

After several weeks, Peter's liver began failing, too. His caregivers — from cardiology, intensive care, social work, palliative care and many other specialties — gathered to tell his parents he might be too sick to receive a new heart.

It was "pretty horrible," to hear the news, said Peter's mother, Katharine Hanson. "But it was great that all those people were there — people we had been relying on."

"Nobody ducked that meeting," Charles said, appreciatively. "Nobody said, 'You tell 'em.'"
Fortunately, a last-minute dose of vitamin K (suggested by Swati Agarwal, MD, then a fellow in the PICU) rescued Peter's liver function. Two short days later, he received a new heart. The caregivers who had supported the Hansons at their worst moments helped them celebrate. In the hours before Peter's transplant, Charles recalled, "it was a parade of nurses and doctors who had treated Peter coming to congratulate us and wish him well."

The transplant, performed by cardiothoracic surgeon Bruce Reitz, MD, a professor emeritus of cardiothoracic surgery at the medical school, succeeded. As Peter recovered in the PICU, his mother and father were touched by the caregivers' efforts to smooth his recovery. The family became close to many of Peter's nurses, respiratory therapists and child-life specialists, and to social worker Mary Burge. But they also appreciated the assistance of people whose names they never learned, such as an electrician who dropped everything to fix a broken television in Peter's room — a huge help in entertaining a restless 2-year-old in the pre-iPad era.

Peter left the PICU after 100 days. Unfortunately, his challenges were far from over.
After the long hospitalization, he could not walk. It wasn't the first time this had happened; after an earlier surgical attempt to repair his heart defect, Peter had needed physical therapy to walk again. And it wasn't the last, either: A few months after his heart transplant, when he had just re-learned walking for the second time, Peter was jumping on a trampoline and broke his leg. "So three times, Karen Kaufman and her colleagues in physical therapy taught him to walk," Charles said.

Following Peter's transplant, his new heart functioned well, but he developed many other medical problems. Frequent ear infections and bouts of pneumonia brought him to Packard Children's otolaryngology and pulmonology teams. Eventually, they diagnosed ciliary dyskinesia, a rare genetic disorder of the cilia that line the respiratory tract and help clear mucus from the lungs. The motion of Peter's cilia was impaired, making it hard for his lungs to fend off infections.

Fortunately, Packard Children's is one of only a few designated ciliary dyskinesia centers in the country. And the strain of Peter's many hospitalizations was further eased by the Hansons' feeling that they had friends in every part of the hospital.

"Pam Bustamante in the periop waiting room is so fantastic," Katharine said, citing one example of these important relationships. "She is such a warm, friendly person — she has got the right job."

"It is also a great comfort to us that there are a whole lot of people behind the scenes," Charles added. "We've met a lot of people who have saved his life many times, but we know there are many others who have helped him that we've never met."

On Peter's 8th birthday, in March 2012, he awoke unable to open one eye. Instead of going to his birthday party, he began a series of assessments in Packard Children's opthalomology, neurology and oncology departments. Finally, his caregivers diagnosed cancer, a type of angioimmunoblastic T cell lymphoma never previously seen in a child. Peter spent the summer of 2012 receiving chemotherapy, an unusually complex endeavor, since he also takes immunosuppressants to keep his heart safe and anti-infection medications for his lungs.

"It was really necessary to make sure everyone worked hand-in-glove," said Cornfield, who is also a professor of pulmonary medicine.

"We know that we are very fortunate to have Peter treated in cardiology at Stanford, but we also know that we didn't just draw the winning ticket in cardiology," Charles added. "Because we have taken him to so many specialties, we know we didn't just hit the jackpot the first time."

Charles and Katharine, who are both high school teachers, are also glad that their family's caregivers are always learning from Peter.

"He's teaching!" Charles said. "He's being looked at by some very clever people who really want to learn from him."

Peter's unusual medical situation has proved instructive for many Packard Children's caregivers and researchers, Cornfield confirmed. But they've learned something more significant, too.

"The remarkable thing is that Peter is always a happy character, a real example of the indomitable nature of the human spirit," Cornfield said. "That's a lesson we could all learn from."