Charli Zumbach
“And little Charli . . . she is evidence of how hard these children fight to survive, at every age. It’s inspiring and a privilege to have played this role in her life.”
A few of the faces of organ transplant recipients this October at Lucile Packard Children’s Hospital Stanford
For Release: November 11, 2016
STANFORD, Calif. — Sixteen children at Lucile Packard Children’s Hospital Stanford received life-saving organ transplants in October, setting a record for the most transplant surgeries performed at the hospital in a single month.
One of those patients was Toni and Jason Zumbach’s daughter, 7-month-old Charli, who was born with biliary atresia, a chronic, progressive liver condition in infants that blocks the bile ducts, quickly causing scarring the liver cells and eventually leading to liver failure. The Zumbachs, who are from Angels Camp, California, came to Palo Alto in September when Stanford Medicine Children’s Health transplant specialists who run a liver transplant clinic at the Madera Children’s Hospital told Charli’s mother, Toni, “We need to get her to Packard Children’s now.”
“We were so happy that we had the connection to this Stanford Children’s team from Madera. This is where we wanted to be for her transplant,” said Toni Zumbach.
Zumbach said their pediatric transplant surgeon, Amy Gallo, MD, reassured them that everything would be fine when the time came for Charli’s transplantation.
“It was surreal,” Zumbach recalled, “but we trust this transplant team with our child’s life.”
“To be given the opportunity by these donors and their families to save all of these children in the past month — many whom were very, very sick — is an amazing honor for us as care providers,” said Gallo, who is also an assistant professor of abdominal transplantation surgery at the Stanford University School of Medicine.
The Packard Children’s Pediatric Transplant Center is a national leader in the field of pediatric organ transplantation and a destination center for the most acute and complex cases, which require highly specialized care. October’s transplant recipients came to Packard Children’s from all over California and the western United States.
“It’s our highest-volume month ever for solid organ transplants,” said Debra Strichartz, administrative director of the Pediatric Transplant Center. She credits the increase in volume to three factors: the donor families who made the organ donations possible, the transplant center’s ability to take on the most complex cases, and a greater number of referrals from doctors who are connecting with Stanford’s transplant experts via telemedicine.
“We are broadening our ability to consult with physicians through telemedicine,” said Strichartz. “For example, we are conferencing with oncologists who have patients with rare liver tumors that require a very high level of transplant knowledge and experience.”
That breadth of knowledge and experience at Packard Children’s, along with its commitment to family-centered care, are the keys to the program’s success, according to Carlos Esquivel, MD, PhD, the Arnold and Barbara Silverman Professor of Surgery and chief of abdominal transplantation at the Stanford University School of Medicine.
“Our ability to take on cases that would be rejected for transplant elsewhere is a credit to the level expertise of not only of our surgeons, but the entire transplant care team,” said Esquivel, who led Charli Zumbach’s transplantation with Dr. Gallo. “From caring for the youngest transplant patients, to pioneering care for patients with rare diseases who are the first with their condition to be transplanted, to performing complex multi-organ transplants — this team is the best of the best.”
That collective “transplant team” involves multiple care teams in each organ specialty, including social workers, dieticians, transplant coordinators, pharmacists, anesthesiologists and surgical subspecialists. In areas like anesthesia, a vital aspect of the transplant surgery, doctors prepare for hours to keep each patient stable during surgery, mitigate risk in cases of unexpected blood loss and respond to crucial physiological indicators throughout the 8–12 hour surgery.
The cornerstone of transplant is organ donation. For the past 2 years, the hospital has been by the U.S. Department of Health and Human Services for its promotion of California’s organ donor registry and its efforts to educate and register new donors.
“We can’t ever say enough of the importance of organ donation,” said Strichartz. “There are often no words to describe its meaning for those on both ends, the family who donates and the patient who receives.”
This October, organ donation from deceased donors was responsible for all 17 organ transplants. On two separate days in October, a single donor was able to provide four organs for transplantation. Currently, there are 82 pediatric patients on the active waitlist for organs at Packard Children’s Hospital.
Those saved by the power of organ donation include 14-year-old, Fernanda Coronado, from San Diego, California, who received a rare double-lung transplant in early October. Packard Children’s is the only center on the West Coast that performs double-lung transplants. Fernanda has cystic fibrosis (CF), a chronic genetic disease that affects the lungs and digestive system, and CF is a top cause of lung transplantation in children. Packard Children’s Pulmonary, Asthma & Sleep Medicine Center is a leading provider for treatment and research of new therapies for CF patients.
Fernanda moved to Palo Alto with her mother in March 2015 to await a transplant.
“When our time came for transplant, it was a mix of emotions: relief, happiness, concern and sadness for that family,” said Fernanda’s mother, Mayra Coronado. “Even after such a long wait, you’re never totally prepared when the time comes, but our team here at Packard Children’s got Fernanda as strong as she could be to go into transplant.”
The transplant surgery was led by Katsuhide Maeda, MD, surgical director of the lung and heart-lung transplant program at Lucile Packard Children’s Hospital and a clinical associate professor of cardiothoracic surgery at Stanford University School of Medicine.
“Getting a patient like Fernanda to the point of a double-lung transplant is truly a team effort,” said Maeda. “Everyone has to work together to get the patient as healthy and strong as possible so he or she can undergo the transplant surgery. It takes a special team like the one at Packard Children’s to achieve this.”
Now Coronado says that Fernanda is doing things she hasn’t done in years, just a few weeks out from her transplant. She can walk without oxygen support and is looking forward to activities like swimming, traveling, or even just climbing a flight of stairs.
“It’s truly amazing,” said Coronado.
“Fernanda has a lot of drive and determination and showed that to me the first time I met her,” said Carol Conrad, MD, director of the pediatric lung and heart-lung transplant program and Pediatric Pulmonary Function Lab. “She worked so hard to get to this point. This transplant enables Fernanda to move into adolescence with confidence and achieve her dreams and goals. She has a long list, but I am sure she will cross them off one by one! She is an inspiration to me and our other clinic patients.”
The continuum of transplant care extends well beyond the operating room into the months before and after transplant. Throughout the month of October, the hospital’s Pediatric Intensive Care Units (PICU) had up to eight transplant patients in recovery at the same time. Mihaela Damian, MD, a clinical assistant professor of critical care medicine at Stanford University School of Medicine, is the transplant physician liaison in the PICU and is working on improving outcomes after liver transplantation by continuous research and ongoing quality improvement. The newest of several clinical research studies being led by Damian will focus on reducing stress in children and their families recovering in the PICU after transplant. Her approach involves providing online education before the surgery and employing virtual reality as a means of distraction therapy as well as for ongoing education after the surgery.
“Every day and with every child, we strive to do even better and create new knowledge specific to pediatric transplantation,” said Damian. “One amazing teenager, a recipient of a lung transplant, told me, ‘All the kids need to have patience, because the day will come when their life starts anew and gratitude will wash over everything. Be present, forget the past suffering, just look forward to the new life ahead.’ I feel very honored to be part of the best transplant team in the nation.”
Authors
Samantha Dorman
(650) 498-7056
sdorman@stanfordchildrens.org
Stanford Medicine Children’s Health, with Lucile Packard Children’s Hospital Stanford at its center, is the Bay Area’s largest health care system exclusively dedicated to children and expectant mothers. Our network of care includes more than 65 locations across Northern California and more than 85 locations in the U.S. Western region. Along with Stanford Health Care and the Stanford School of Medicine, we are part of Stanford Medicine, an ecosystem harnessing the potential of biomedicine through collaborative research, education, and clinical care to improve health outcomes around the world. We are a nonprofit organization committed to supporting the community through meaningful outreach programs and services and providing necessary medical care to families, regardless of their ability to pay. Discover more at stanfordchildrens.org.
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