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Photos by Mark Susan, Allison Otu and Craig Ross

Since its $538 million expansion into a new 11-story tower and merger with old rival St. Joseph's this summer, Phoenix Children's Hospital has witnessed a staggering 80 percent surge in admittance to its trauma center.

Last December, 10-year-old Dominic Coulter nearly lost his left arm in a tragic car accident that claimed his grandmother. Today, Dominic has regained almost full mobility in his arm and has become a blue belt in karate.

Seven-year-old Amber Fernandez, who's been staying at the hospital, is bravely battling a cancer known as acute myeloid leukemia. Photo credit: Allison Otu

Julie LeDuff says the opportunity to have her daughter, Talia, contribute to research through her life-saving operation is what PCH is all about. Photo Credit Craig Ross

In 2009, Dr. Jeffrey Pearl operated on 2-year-old Asialyn DeGraw to repair a hole in her heart. Asialyn's mother, Dixie, says she now understands the connection people have with Phoenix Children's Hospital.

Published by Times Publications, November 2011

As the medical director of the trauma center at Phoenix Children’s Hospital – which, since its $538 million expansion into a new 11-story tower and merger with old rival St. Joseph’s this summer, has witnessed a staggering 80 percent surge in admittance – Dr. David Notrica has probably seen more seriously injured kids than anybody in the city.

“You don’t take care of injured kids without it affecting you,” says the pediatric surgeon, who, on the bright side, has been able to bring in some of the best in-house trauma surgeons, anesthesiologists, emergency medicine physicians and pediatric intensivists in the nation to handle the demand. Along the way, he’s also become something of a specialist in treating traumatized parents.

“A lot of times when parents are stressed, they have a million questions but they can’t get one out,” he says. “Number one, they’re concerned about whether their child is going to live or die. Two, they’re concerned about whether or not their child is going to have permanent damage. They want to know how long it’s going to take for them to recover from this injury, or this disease process. They want to know when they can go back to school, when they can eat normal meals.

“Mostly,” Notrica says, “they want to know when they’re going to get their kid back again.”

Sometimes, tragically, a child never fully returns from a traumatic injury or illness, no matter how good the surgeons and staff. More often, getting a stricken child back to his or her old self is a slow process of painfully small steps.

But occasionally, a child emerges from a place like Phoenix Children’s Hospital, even better than before.

Karate Kid

Last December, Dominic Coulter, a 10-year-old Lake Havasu boy, was traveling with his grandmother along I-10 when the van they were riding in veered suddenly off the road about 90 miles west of Phoenix, causing it to roll over at least five times. Coulter’s grandmother was critically injured in the crash and passed away nine days later. Dominic survived, but his left arm was nearly severed.

Notrica remembers the call from the paramedics who helicoptered Dominic to PCH. “Their description of the scene inside the car was particularly gruesome,” he says. Robin Flores, a close family friend who became Dominic’s guardian following the loss of his grandmother and has since adopted him, says she arrived at the hospital from Lake Havasu to find Dominic’s arm hanging on by less than an inch of nerves and muscle tissue.

“They told me the bone was sticking out when the paramedics arrived at the accident,” she says. “When he rolled, the wreck sliced open his whole arm.”

Remarkably, Notrica’s team at PCH’s Level 1 Pediatric Trauma Center, the state’s first and only trauma center for children certified by the American College of Surgeons (ACS), and Dr. Lee Segal, head of the hospital’s Center for Pediatric Orthopaedic Surgery, were able to reattach Dominic’s arm, applying a skin graft requiring 120 stitches. Today, after months of thrice-weekly therapy sessions, Dominic has regained almost full mobility in his arm and has become a blue belt in karate. “He actually skipped two belts,” Flores says. “He went right from a white belt to a blue belt.”

Plus, one other thing. “He’s doing very well in school — he’s a straight-A student,” Flores says, in a voice tinged more with amazement than boastfulness. “He’s never been a straight-A student!”

Flores says now Dominic’s goal is to become a physician like Dr. Segal, whom Flores calls “our Patch Adams” because of the surgeon’s humorous style and passionate care. Segal, who, true to Flores’ benevolent characterization, juggles a practice that includes treating overlooked kids with Spina Bifida and club foot with twice-yearly mission work in Honduras, says he hears that a lot.

“A lot of kids, after they sustain an injury and receive care, say they want to be a physician,” shrugs Segal, who was recruited from the Children’s Hospital of Philadelphia, the nation’s first hospital devoted exclusively to pediatric care. But he feels such statements actually signal aspirations that go beyond mere hero worship.

“When I do operations on children who have severe deformities and they come out completely changed, it really is transforming for them in a lot of ways,” he says, noting the particular gratification to be found in brightening the futures of patients still young enough to embrace life with a fresh fire.

“There’s a little girl I treated recently who had a severe deformity in her legs. She couldn’t get out of the chair, she couldn’t walk, she was afraid to be around kids.

“Now her legs are nice and straight, she’s losing weight and isn’t afraid to be out in public anymore,” he adds, happily. “It’s gonna change her life.”

Little Superheroes

Four-year-old Benjamin Fernandez gazes out the window from his sister’s room on the seventh floor of PCH’s new patient tower, dragging a tiny action figure across the pane as if imagining the molded plastic superhero flying high above the downtown city streets.

By all appearances, little Benjamin looks to be oblivious to the cluster of relatives and nurses swarming around his 7-year-old sister, Amber, who’s been staying at the hospital bravely battling a cancer known as acute myeloid leukemia.

But his mother knows better. She sees Benjamin imagining himself as that Happy Meal superhero on the window pane, swooping in to save his sister’s life with the bone marrow transplant he’s heroically volunteered to serve as donor for.

“What do you think about being Superman and saving Amber?” asks Kelly Fernandez, while Benjamin simply continues to play with his action figures. She says Benjamin, who, unlike her and husband Ben, turned out to be a perfect match for the stem-cell transplant, has been made aware of what will be involved in the life-saving operation, scheduled to take place at PCH in late November.

“He’ll have a two- or three-hour procedure where they’ll draw off the stem cells, then it’ll go back to blood services to be inspected and then it’ll come back here to be transplanted into Amber in the operating room,” she says. “He’s been told he’ll be sore for a while, like falling on ice and smacking his back. But he’s ok with that.”

While PCH has aggressively recruited top doctors from around the country to staff its six new Centers of Excellence — which include all-in-one treatment centers for heart, trauma, neuroscience, pediatric orthopaedic surgery, cancer and blood disorders and a newborn intensive care unit — some of the biggest life savers at Phoenix Children’s are the kids themselves. Doctors there have discovered that young patients can feel happier, more important and uncommonly empowered when offered real opportunities to help fellow kids.

Certainly that was the case with Talia LeDuff, who first came to Phoenix Children’s Hospital for brain surgery to relieve the life-threatening grand mal epileptic seizures she had been having. While she was still a bit terrified from having been air-evaced to the hospital and hooked up to electrodes to determine from where her seizures were originating, chief pediatric neurosurgeon Dr. David Adelson, director of PCH’s Children’s Neuroscience Institute, asked the then- 10-year-old Talia if she wouldn’t mind playing a videogame using nothing but her thoughts to control a soccer ball on the screen. It was the funnest offer she’d had all day. A computer recorded her brainwaves, and afterward, repeated her moves precisely.

The exercise, first and foremost, helped a scared young girl feel amazingly superpowered moments before her surgery, which, after being followed up by several repeat visits, has alleviated the seizures — and, finally, the debilitating headaches. In fact, according to her mother, Talia appears to be another PCH patient who’s come out even better from having been treated there.

“Her memory has actually improved,” says Julie LeDuff, who was initially warned by other doctors that the part of Talia’s brain affecting speech might have to be removed. Adelson was able to work around it, and now her mother has enrolled the photogenic sixth grader in a small charter school in Peoria with an ambitious performing arts program, to nurture her dreams of becoming a singer. “It’s really quite amazing.”

But Talia’s participation in Adelson’s groundbreaking study on brain-computer interface technology, funded by the Arizona Biomedical Research Commission and conducted in collaboration with Arizona State University, also allowed her to become a real-life hero to future patients suffering from strokes, cerebral palsy and other brain disorders. Thanks to her, and to the unique brain trust formed by the collaboration, people locked in uncommunicative worlds may someday have computers that can translate their thoughts.

“What the institute does is crosses the classical barriers of medical divisions and integrates clinical care, research and education,” explains Adelson, who’s also established research collaborations with Barrow Neurological Institute, Mayo Clinic-Arizona, Translational Genomics Research Institute and the University of Arizona. “Because children recover so well, what we really want to do is focus that positive plasticity in such a way that we can really optimize outcome in other areas.”

For Talia’s mom, the opportunity to have her daughter contribute to research that will help others exemplifies what she feels the hospital is all about.

“I’m a social worker, and I’ve worked with people who are impacted with strokes and who could not communicate, not even using a chalkboard,” says LeDuff. “If they could have the ability to move a computer cursor with their brains, their whole lives would be completely changed. It’s wonderful that Talia could contribute to that.”

Making Connections

“I know it looked good on paper,” says Dr. Jeffrey Pearl, director of the Children’s Heart Center at PCH, describing the long, arching hallways that follow the curvy outlines of the new tower at the center of Phoenix Children’s Hospital. “But one of the things the nurses were a little upset about was this beautiful new ICU has got a curve in it, so if you’re at one end of the hallway looking down, you don’t have the line of sight you used to have with the other nurses. So they got them these little walkie-talkies they wear around their necks so that they can call whatever specialists, doctors or nurses they need.”

While the size of the new facility has required some adjustments (Pearl says it’s also a longer walk to the cafeteria), most of the surgeons are happy they finally have the equipment, space and staff to perform virtually any type of procedure a sick or injured child might require. Pearl’s reassuring good humor stems from his total confidence in the care his staff is able to provide at PCH, from performing heart transplants and cutting-edge hypoplastic single-ventricle repair to plugging a leaking pulmonary valve using a nonsurgical catherization procedure in the Southwest’s only “hybrid” lab, where cardiologists and surgeons can work together.

“There’s really nothing now that we can’t do here,” he says. “I don’t think any other hospital has every pediatric subspecialty under one roof, which we now do. And most things are fixable.”

Dixie DeGraw can happily attest to that. In the summer of 2009, a pediatrician detected a slight heart murmur in her not-quite 2-year-old daughter Asialyn, which was later diagnosed as ASD, or Atrial Septal Defect.

“Basically, it was an 18 millimeter hole in our daughter’s heart, and we were told she would need open heart surgery,” Dixie says. “It was like our whole world just came crashing down on us.”

The cardiologist recommended Pearl, who Dixie recalls made a point of updating her and husband Kent on Asialyn’s progress hourly, up until the final good news: although Asialyn’s heart had failed twice during the operation and had to be put on a bypass machine, she was stabilized and doing just fine. Today, the DeGraws remain close to the doctor, sending him homemade photo montages each Christmas showing the progress of the healthy little girl whose life, they maintain, is literally owed to his work.

“There’s a connection people have to Phoenix Children’s Hospital that we never understood — until we had to bring our own daughter there,” says DeGraw. “Now every time we drive by the hospital, we feel the depth of that connection.”

Already the Fernandez family is beginning to feel part of the PCH family, too. In October, Ben Fernandez’s younger brother and sister, who lead a flamenco group in Tucson called Tesoro, staged a benefit concert for the Arizona Chapter of the Leukemia and Lymphoma Society, raising more than $22,000, which the family presented to representatives on a giant check at the hospital.

“We know we’re in great hands here,” says Fernandez, father of young Amber, who fell ill this past July while visiting her grandparents in Virginia with what was first thought to be pneumonia but was later diagnosed as leukemia. Fernandez is confident the bone marrow transplant from his son Benjamin will replenish the red and white blood cells Amber needs to fight off infections and regain her health.

“The transplant will basically be her new birthday,” says Fernandez, smiling. “It will wipe out everything she’s had in her seven years of life, and then it will be a few weeks before her cells start to recover, and provide what her body needs to keep her healthy.

“But that will be her new birthday,” he says again, looking on at his resilient, smiling daughter and the brave young son who’ll be helping to give her that renewed start in life. “And we couldn’t feel better about it happening here.”

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