From advanced pediatric medical and surgical care to in-house research and collaborative clinical investigation with national pediatric leaders, the scientists, providers and care teams at Penn State Children’s Hospital continue to break down barriers to inform treatment and foster excellent outcomes for children and families throughout Pennsylvania and the surrounding region.
With a call to Children’s Hospital, pediatricians and primary care providers can reach referral partners with vast experience and high-level training necessary to address almost any condition, regardless of complexity. As a result, whether a child needs routine surgery or treatment for a rare cancer, families need not leave the area for outstanding pediatric care.
Pediatric and Congenital Heart Surgery
Working closely with pediatric cardiologists, pediatric heart surgeons at Children’s Hospital perform approximately 200 operations per year, according to Joseph Brian Clark, MD, FACS, chief of pediatric and congenital heart surgery at Children’s Hospital. Highlighting the caliber of care provided by Children’s Hospital specialists , Dr. Clark cites The Society of Thoracic Surgeons’ (STS) pediatric heart surgery registry and online public report, which makes key outcomes transparent for families and referrers.
“Of approximately 120 programs that reported data for the 2012–2015 period, Children’s Hospital falls into the group of eight that showed outcomes — hospital survival — significantly better than the national average. These programs earned the highest, three-star rating from the STS,” he says. “Our program, at Children’s Hospital, is the only three-star program in the Northeast. We offer virtually all levels of complex pediatric heart surgery.
“For children in central Pennsylvania and the surrounding area,” he continues, “Children’s Hospital offers surgical heart care that has been demonstrated to be among the very best in the country.”
“Many programs can perform less complex operations with satisfactory results, but the best centers excel when it comes to difficult procedures on the youngest, smallest infants with the most complex conditions.”
—Joseph Brian Clark, MD, FACS, chief of pediatric and congenital heart surgery at Children’s Hospital
Among complicated heart procedures, surgery to address single-ventricle heart disease, in which infants are born with only one functional ventricle, is one of the most intricate. Caring for these patients demands close collaboration among cardiologists, pediatricians and surgeons.
“Management of babies with a single ventricle can be challenging; consequently, it’s an area where better hospitals with teams of specialists can markedly outperform other programs,” Dr. Clark says. “Many programs can perform less complex operations with satisfactory results, but the best centers excel when it comes to difficult procedures on the youngest, smallest infants with the most complex conditions.”
Outside the operating room, pediatric cardiovascular researchers, under the guidance of Akif Undar, PhD, design and improve devices to support heart function.
“Dr. Undar is the originator and host of an international conference on cardiopulmonary bypass and mechanical circulatory support,” Dr. Clark says. “He is a prolific writer and one of the world’s foremost experts in pediatric cardiopulmonary bypass.”
In addition to direct patient care, Dr. Clark is also involved in pediatric heart device research, including a pediatric ventricular assist device, a pediatric total artificial heart and a support device for single-ventricle patients who need additional circulatory support later in life.
“There is only one dedicated pediatric ventricular assist device in use in the U.S. today,” Dr. Clark says. “The National Institutes of Health has been funding research and development to improve the options available for children’s mechanical circulatory support, either as a bridge-to-transplant or potentially as a destination therapy.”
Other research at Children’s Hospital includes studies into 3-D modeling of children’s hearts prior to surgery for congenital heart defects, mechanical circulatory support during surgery and noninvasive imaging for pediatric cardiomyopathies.
Research also plays a crucial role in the Children’s Hospital pediatric neurosurgery program, headed by Mark Dias, MD, FAAP, FAANS, director of pediatric neurosurgery and professor of neurosurgery and pediatrics, and vice chair for neurosurgical education at Penn State College of Medicine. Many of the pediatric neurosurgery projects are consortium-based, combining data from multiple institutions to derive best practices in treating complex neurological conditions.
Mark Dias, MD, director of pediatric neurosurgery and professor of neurosurgery and pediatrics, and vice chair for neurosurgical education at Penn State College of Medicine
“For example, in the spina bifida registry with the Centers for Disease Control and Prevention (CDC), we are among the collaborating institutions, following more than 5,000 patients nationwide,” Dr. Dias says. “We, and the other 16 centers participating in the registry, are identifying the most appropriate care for children with spina bifida and determining optimal management practices to provide the best outcomes for these children.”
Similarly, the Park-Reeves Syringomyelia Research Consortium unites the expertise of Children’s Hospital researchers with that of scientists from other facilities to study the best operative management of Chiari malformation and syringomyelia. These conditions, often found together, cause spinal fluid to accumulate within the spinal cord and may cause paralysis if untreated. However, surgical approaches can improve symptoms and often cure this condition. Preventing craniosynostosis is another avenue of investigation for Children’s Hospital researchers, as is brain tumor research.
“In one line of study, we are looking at DIPG, or diffuse intrinsic pontine glioma, a malignant tumor of the brainstem,” Dr. Dias says. “We are working with other institutions to determine the best care for patients with DIPG and to improve survival for this, the most aggressive — and least curable — form of brain cancer in children.”
“Innovative research makes up just one part of the children’s neurosurgery program; meticulous attention to safety is another. One result of that is a remarkably low infection rate,” Dr. Dias says.
Dr. Dias, who leads surgical-site infection prevention efforts at Children’s Hospital, notes that infection prevention is a priority. “One of the metrics often used in pediatric neurosurgery is the rate of shunt infections, with published rates ranging from 5 to 26 percent and averaging 8 percent,” he says. “Using a Hydrocephalus Clinical Research Network protocol, we have reduced our rate of shunt infections to approximately 1 percent.
“We have procedures before, during and after surgery to reduce surgical-site infections,” he says. “We also have rigorous protocols to reduce ventilator-associated pneumonia, central line-associated bloodstream infections and catheter-associated urinary tract infections. These quality metrics involve people from multiple disciplines working together to produce excellent outcomes.”
One advantage that raises the pediatric neurosurgery program above others in the area, Dr. Dias points out, is its collaboration with physicians in the adult neurosurgery division. “We provide a multidisciplinary approach in our spina bifida clinic, our craniofacial clinic and our brain tumor clinic,” he says. “Our program has board-certified subspecialists in very distinct areas of neurosurgery who are recognized as international experts in their field, but we also offer a breadth of knowledge through our partnership with the adult program. We coordinate with our colleagues who have additional expertise in areas such as aneurysm and functional neurosurgery. They, in turn, glean from our expertise to help them care for adult patients with congenital brain and spinal cord conditions.”
Pediatric Surgery and Intensive Care
Surgeons at Children’s Hospital perform more than 15,000 inpatient and outpatient procedures annually. That high volume leads to greater individual and team experience that enhances quality.
Robert Cilley, MD, surgeon-in-chief
“We have demonstrably superior outcomes in the major quality metrics that define superior care in children’s hospitals in the 21st century,” says Robert Cilley, MD, surgeon-in-chief and pediatric surgeon at Children’s Hospital.
In addition to superior outcomes in congenital heart surgery, Children’s Hospital also prides itself on superior outcomes in various metrics for pediatric trauma care and surgical quality. Nonetheless, Dr. Cilley says, every member of the team continues striving for improvement. Departments work in tandem to optimize outcomes and reduce complications at every stage of a patient’s journey from surgery to PICU to step-down care.
Gary Ceneviva, MD, division chief of pediatric critical care
Gary Ceneviva, MD, division chief of pediatric critical care at Children’s Hospital, agrees. His division plays a key role in supporting the work of numerous disciplines across the hospital. “We have a strong group of medical and surgical subspecialties, and we collaborate closely with them,” Dr. Ceneviva says. “We enjoy very open and candid relationships with the surgeons and various medical subspecialists we serve. These relationships enhance our care of children. We are able to communicate as a team and give families consistent messages regarding their child’s care.”
The operating rooms and PICU are busy places at Children’s Hospital. As part of a Level 1 Trauma Center, surgeons respond to plenty of emergencies; Dr. Cilley notes that about 40 percent of his cases are unscheduled.
“We are here 24/7 providing emergent, urgent and electively scheduled surgeries across all disciplines: heart surgery, general surgery, neurosurgery, orthopaedic surgery, urology, otolaryngology, plastic surgery and ophthalmology,” he says. “We are a full-service program. Families need not leave central Pennsylvania to access a high level of care for their children.”
“The most common conditions treated in the bustling, 18-bed PICU and Pediatric Cardiac Care Unit include cardiac and respiratory conditions, followed by neurological conditions, poisoning, cancer and infectious diseases,” according to Dr. Ceneviva.
“Some of our patients have an underlying congenital or genetic condition, in addition to an infection,” he says.
While some programs separate pediatric ICUs by specialty, Dr. Ceneviva welcomes the cross-pollination of experience that comes with a multidisciplinary PICU.
“We haven’t separated out pediatric surgical, neurosurgical or cardiac units. We do, however, have a pediatric cardiac ICU with dedicated, trained physician and nursing staff. We believe the skill and knowledge our nursing and physician staff gain by providing care to such a diversified population in one location benefit patients across the board,” he says. “It is challenging to care for all patient populations, but I embrace it for our unit. Caring for different patient populations with different medical and surgical conditions provides a unique opportunity to extrapolate what we’ve learned from one patient to be used for the benefit of another patient. Our testing, physical exam, assessment and management is more thorough because we bring that wide experience to bear.”
Advanced therapies, such as extracorporeal membrane oxygenation, are available at Children’s Hospital, along with the highly skilled care teams who support these therapies.
“From our perfusionists who provide technical support for cardiac bypass procedures, to our PICU nurses, floor nurses and therapists, we create an environment that allows for extraordinary results,” Dr. Cilley says. “In the trauma program, our commitment to excellence extends to our emergency department and transport personnel.
“Penn State Children’s Hospital is full of caring individuals who strive to create the highest quality and provide the best outcomes. As compassionate pediatric specialists, we care about what we do.”
Children’s Hospital shines in the field of pediatric oncology and hematology, as well. Memberships in national consortia and a history of excellent outcomes make the program the logical referral center for children throughout the region who have new or refractory cancers. With programs in sickle cell disease, hemophilia, neuro-oncology, pediatric survivorship, stem cell transplant, experimental therapeutics, and adolescent and young adult cancers, to name several, the program meets the needs of virtually any patient with pediatric cancer or blood disease.
Barbara Miller, MD, chief of pediatric hematology/oncology and vice chair for research in the Department of Pediatrics, associate director of pediatrics in the Penn State Cancer Institute and Christopher Millard Endowed Chair in pediatric oncology research at Penn State College of Medicine
Barbara Miller, MD, chief of pediatric hematology/oncology and vice chair for research in the Department of Pediatrics, associate director of pediatrics, Penn State Cancer Institute, and Christopher Millard Endowed Chair in pediatric oncology research at Penn State College of Medicine, notes that the program’s success rate for most clinical trials equals or exceeds national averages. In fact, the program is ranked in the top 50 pediatric oncology programs nationally by U.S. News & World Report.
“We are a member of the Children’s Oncology Group, and we also participate in the Pediatric Oncology Experimental Therapeutics Investigators’ Consortium (POETIC) and Beat Childhood Cancer,” Dr. Miller says. “This means Children’s Hospital can offer phase 1 and phase 2 trials to patients who have refractory or relapsed disease, and they do not have to travel far from home to participate in innovative clinical trials. We are the only major institution offering phase 1 and 2 trials in pediatric oncology in central Pennsylvania.
“Data confirm the program’s success. In the area of stem cell transplant, for example, it has a 100 percent survival rate at 100 days among cancer patients who receive transplants from sibling-matched donors and 94 percent for all other allogenic transplants at 100 days.
“We are the only program in central Pennsylvania offering pediatric stem cell transplant,” she says. “We also have extremely active lab-based and translational-based research programs in pediatric oncology. All of the laboratories in the Four Diamonds Pediatric Cancer Research Center receive National Institutes of Health funding, reflecting high regard for our pediatric research programs nationally.”
Four Diamonds, an organization that pays for pediatric cancer treatment not covered by insurance for eligible Children’s Hospital patients, promotes this research, as well. Supported by Four Diamonds, pediatric oncology research at Children’s Hospital involves everything from studies into origins of molecular mechanisms resulting in pediatric cancers to clinical trials for experimental therapeutics.
“Through our participation in national groups, we offer advanced clinical trials to pediatric cancer patients at different stages,” Dr. Miller says.
Direct patient care and comprehensive support services are also provided by Four Diamonds.
“Four Diamonds supports our social workers, psychologists, child life specialists, dietitians, music therapists, and nurse specialists and practitioners,” Dr. Miller says. “It allows us to provide a program with significant psychosocial support, as well as the latest medical treatments, to our patients and families.”
From congenital deformities to sprains and fractures, the Children’s Hospital pediatric orthopaedics program cares for urgent and ongoing concerns, following children as they grow.
Scott M. Sorenson, MD, pediatric orthopaedic surgeon
Pointing out that the program is in the U.S. News & World Report top 50 for pediatric orthopaedic surgery, Scott M. Sorenson, MD, pediatric orthopaedic surgeon, notes the wide range of specialties offered. “We provide specialty care in pediatric orthopaedic trauma, spine and limb deformities, sports injuries and neuromuscular conditions, including spina bifida and cerebral palsy,” he says. “Ongoing research in our department focuses on clubfoot, hip dysplasia, pediatric scoliosis surgery and adolescent sports injuries. These studies have been presented at regional and national orthopaedic meetings.”
Program physicians investigate everything from bone biology to population health and patient compliance with orthopaedic programs. Dr. Sorenson’s own work investigates the biomechanical nature of bones, including developmental factors, such as how loading affects bone density. Other work includes research into incidence and severity of lawn mower accidents in children, along with recommendations for practical solutions.”
“We are skilled in utilizing new technology in pediatric spine surgery, such as the MAGEC® growing rods by and the PRECICE® Intramedullary Limb Lengthening System, both by NuVasive,” Dr. Sorenson says. “We treat many patients with these new technologies.”
The benefits to patients are realized throughout Pennsylvania; the program holds daily fracture clinics during the summer months, serving satellite clinic locations at Penn State Medical Groups in Camp Hill, State College and in Reading, on the Penn State Health St. Joseph campus.
The Hummingbird Program
Michelle Freeman, MD, MEd, FAAP, medical director of the Hummingbird Program and assistant professor of pediatrics and medicine at Penn State College of Medicine
Penn State Children’s Hospital defines success in many ways — including the essential care it provides through the Hummingbird Program to children with life-limiting illnesses and conditions. Michelle Freeman, MD, MEd, FAAP, medical director of the Hummingbird Program and assistant professor of pediatrics and medicine at Penn State College of Medicine, leads this program, which is dedicated to palliative care and social support.
“Our outcomes are different from those of other specialties,” she says. “We do value prolonging life, but we also define ‘quality’ as helping patients and their families identify their most important goals in the face of life-limiting illness. We then help them and other medical providers shape their care to meet those goals.”
Conversations are at the center of the Hummingbird Program, Dr. Freeman says. “We find out what’s important to people by asking,” she says. “We specialize in communication with patients, families and medical providers.”
Communication might take the form of instruction, as Hummingbird Program providers help families and their pediatricians understand the progress of complex conditions, such as rare neurodegenerative diseases. It may also include facilitation, as families meet with groups of providers to ask questions and map out care for their child.
The program offers advanced symptom management, as well, helping patients control pain, nausea and anxiety. “Any physician or advanced care provider can make a referral or simply initiate a conversation about when it would be best to involve the Hummingbird Program’s services,” Dr. Freeman says.
Hummingbird Program providers also offer solutions to help support patients’ goals and make them more attainable; for instance, they can enable discharge when patients still need palliative care.
“Medically, some patients can leave the hospital, but they require complex symptom management,” Dr. Freeman says. “With our ability to offer concurrent palliative and hospice care, we can help children go home while providing the high level of symptom management they require, so they can go to school or the prom or spend time with family — whatever they want to do to make the most of their time.”
“As specified by the Concurrent Care for Children Requirement of the Affordable Care Act, children with life-limiting illnesses can continue to receive curative or life-prolonging medical care and they can also receive hospice services at the same time,” Dr. Freeman says.
“We celebrate with children as they ‘graduate’ into recovery; we take on primary medical management for children who do not get well and go into hospice care,” she says. “There is also an in-between time of lifesaving or life-prolonging and concurrent palliative care. During that time, we work alongside the other medical teams involved in the patient’s care.”
Dr. Freeman’s message to referrers might easily be spoken by any physician at Penn State Children’s Hospital: The most important thing is for them to know we are open to conversation. We appreciate the opportunity to speak with providers about how to effectively support them and their patients, in whatever way possible.
To contact a member of the Hummingbird Program team at Penn State Children’s Hospital, call 717-531-3558 or visit Childrens.PennStateHealth.org/hummingbird.
For additional information about any services, providers or research at Children’s Hospital, call 800-233-4082, option 4, or visit Childrens.PennStateHealth.org.