MUSC Children`s Heart Center

Transcription

Healing
Young
Hearts
MUSC Children’s Heart Center
Our Mission
Contents
State of the Art Technology and Care........................................................ 2
“We take great pride in our roles as educators as well as care-givers. At every training level, we aim to impart
a thirst for excellence in clinical care, research, and leadership. I am gratified to have infused the excitement
of clinical investigation to dozens of pediatric cardiology fellows and faculty, many of whom now enjoy
independent federal funding.“
Dr. Andy Atz, Chief, Division of Pediatric Cardiology
“It is both a privilege and a pleasure to work daily with the other members
of our team to provide care to congenital heart patients.”
Dr. Scott Bradley, Pediatric Cardiac Surgeon
“We realize that each child is a special and unique individual. Rather than a one size fits all mentality, we
provide compassionate individualized care to the child. We also understand the impact congenital heart
disease can have on the entire family. We provide support to family members and encourage their involvement
in their child’s recovery. This collaborative and supportive environment provides the foundation for everything
we do including education and scientific discovery.” Dr. Eric Graham, Pediatric Cardiologist
Cardiothoracic Surgery.................................................................................................................. 2
Cardiothoracic Anesthesia........................................................................................................... 4
Tracheal Stenosis Program........................................................................................................... 4
Heart Failure and Transplantation............................................................................................. 6
Interventional Cardiac Catheterization................................................................................... 8
Echocardiography........................................................................................................................... 10
Fetal Cardiology.............................................................................................................................. 11
Advanced Cardiac Imaging .......................................................................................................12
Pediatric Cardiac Intensive Care Unit....................................................................................13
Electrophysiology and Ablation Services............................................................................. 14
Heart Health Program.................................................................................................................. 14
Adult Congenital Heart Disease............................................................................................. 15
Research.............................................................................................................................................. 16
Pediatric Heart Network.............................................................................................................. 16
Fellowship Training Program..................................................................................................... 18
Family-Centered Comprehensive Care..................................................20
Nursing................................................................................................................................................20
Family Support and Waiting Services....................................................................................22
Child Life Specialists.....................................................................................................................22
Child Life Atrium............................................................................................................................22
Access to Care.................................................................................................. 24
Referring a Patient..........................................................................................................................24
MEDUCARE ..................................................................................................................................24
Insurance Information ..................................................................................................................24
“It’s a lot of hard work and effort, but when you see how our patients do, it’s just truly
miraculous; it’s something that’s very gratifying, and I think not a lot of things can feel
like that ... it’s why I think pediatric and congenital heart surgery is one of the most
gratifying fields.“
Dr. Minoo Kavarana, Pediatric Cardiac Surgeon
Cardiac Surgery Program Highlights....................................................... 26
The Children’s Heart Program of South Carolina...........................................................26
The Children’s Heart Program of South Carolina................................ 28
“If you want to do something meaningful for someone, do something for their child.”
Dr. Mark Scheurer, Pediatric Cardiologist
Photography Brennan Wesley
Changing What’s Possible
State of the Ar t Technology and Care
Cardiothoracic
Surgery
Under the leadership of Dr. Scott Bradley, surgeons at the MUSC Children’s Heart Center excel in
the full range of pediatric surgical procedures for acquired and congenital cardiac disorders. More
than 400 major operations are performed annually. Our specialists treat patients from birth, through
adolescence and, in cases of congenital heart disease, into adulthood.
Our comprehensive surgery program is the only one in South Carolina, and, with an overall 30-day
survival rate of 99%, ranks among the best in the world. The combination of specialized advanced
technology and an individualized approach in an intimate, attentive environment ensures this continued
success. The number of surgical procedures we perform has steadily increased every year since 1996
through growing regional, national, and international referrals.
The high standard of care maintained by MUSC Children’s Heart Center surgical specialists is
reflected in our achievements:
• A 99% 30-day survival rate for all surgical procedures from 2007-2013
• An 86% discharge survival rate for the Norwood procedure for hypoplastic left heart syndrome
from 2007-2013
• Special expertise in reconstructive surgery for the correction and palliation of all forms of cardiac
defects in infants, children, and adolescents
• Emphasis and excellence in early, complete repair during infancy
• Surgical management of patients with congenital heart disease from premature neonate to adult
• Innovative improvements in surgical techniques and operative strategies such as heart-lung bypass,
blood preservation, and minimally invasive surgery
• One of the country’s only dedicated Pediatric Cardiac Intensive Care Units (PCICUs). The 12-bed
PCICU has the latest technology and is designed specifically for the critical care of all pediatric
cardiac cases, including postoperative monitoring and management
• Ross repair for aortic valve replacement and valve-sparing aortic root replacement for
Marfan Syndrome
• 24-hour Extracorporeal Membrane Oxygenator (ECMO) availability
• Biventricular pacemaker therapy and pediatric Automatic Implantable Cardioverter
Defibrillator (AICD)
• The first implantation of the Berlin Heart Ventricular Assist Device in the Southeast
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State of the Art Technology and Care
Cardiothoracic
Anesthesia
Providing world-class surgery requires a team approach. An essential part of any surgery is managing
pain. Children with congenital and acquired heart disease have special needs when it comes to
anesthesia. Led by the Chairman of Anesthesia, Dr. Scott Reeves, and Chief of the Division of
Pediatric Cardiothoracic Anesthesia, Dr. Scott Walton, our dedicated team of six specialized pediatric
cardiothoracic anesthesiologists are highly qualified to plan safe anesthesia for each child individually
based on age, weight, diagnosis, type of surgery/procedure, and past history. Their services include:
• Evaluation of the child and discussion with parents prior to the procedure
• Individualized comprehensive management during surgery — including anesthetic drugs,
management of cardiovascular drugs, and transfusion of blood products
• Anesthetic care of children undergoing cardiac catheterizations, electrophysiology studies, and
advanced cardiac imaging studies
• Anesthetic management of children with congenital heart defects undergoing noncardiac surgery —
including the coordination of multidisciplinary providers
• Development and refinement of strategies, equipment, drugs, and techniques to optimize outcomes
Tracheal Stenosis Program
Congenital tracheal stenosis due to complete tracheal rings is a life-threatening problem requiring
surgical treatment in the great majority of cases. Approximately half of children with congenital tracheal
stenosis have concomitant congenital heart anomalies. Surgical management generally includes slide
tracheoplasty that is performed on cardiopulmonary bypass. Associated cardiovascular anomalies are
addressed during the same procedure.
Successful treatment requires a team comprised of several pediatric subspecialists: cardiologists,
cardiothoracic surgeons, otolaryngologists, and anesthesiologists. With experienced specialists in all of
these areas, MUSC Children’s Hospital excels in the treatment of these complex patients. To date, our
one-year survival rate after slide tracheoplasty is 100%.
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Heart Failure and
Transplantation
The MUSC Children’s Heart Center is a pioneer in the treatment of end-stage heart failure in children and
offers the only pediatric heart transplant program in South Carolina. For over two decades, the Children’s
Heart Transplant Program has made this lifesaving surgery an option for patients who no longer respond
to medical treatment. Our multidisciplinary team of transplant specialists includes surgeons, cardiologists,
anesthesiologists, perfusionists, psychologists, advanced nurse practitioners, childlife specialists, nurses, and
social workers delivering comprehensive patient care with the highest survival rate in the Southeast.
Up to a third of children waiting for a heart transplant die each year due to the scarcity of
suitable donor organs. Doctors at MUSC use a variety of mechanical circulatory support
devices to stabilize high-risk patients and bridge them to heart transplant. In addition to
ventricular assist devices like the Berlin Heart® and Thoratec PediMag®, our pediatric
cardiothoracic surgeons perform extracorporeal membrane oxygenation implantation
around the clock. We are one of the first pediatric centers to implant the HeartWare®
device, a ventricular assist device that allows teenagers to leave the hospital and return to
normal daily activities (like fishing).
A recommendation for heart transplant surgery is made after all of the most advanced
medical options have been fully explored including:
• Proven maximal medical therapeutic agents for heart failure in children
• Comprehensive screening, diagnosis, and management of all forms of heart muscle failure and
cardiomyopathies
• Pulmonary vasodilator therapy for pulmonary hypertension, including agents such as bosentan (Tracleer®)
and sildenafil (Revatio®)
• Diagnostic and interventional cardiac catheterization
• Aggressive anti-inflammatory treatment for myocarditis, including immunoglobulin therapy
Our expertise in the surgical management of heart failure includes:
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ABO-incompatible heart transplantation for infants
Leading center in the diagnosis and treatment of antibody mediated rejection
Heart transplantation when necessary for all congenital cardiac defects
A multidisciplinary team with expertise in desensitization techniques for highly sensitized patients
Minimally invasive implantation of automatic implantable cardioverter defibrillator (AICD) in infants and
small children
• Outpatient intravenous medication administration until donor heart is available
• Access to extracorporeal membrane oxygenator and ventricular assist device – a lifesaving bridge to
transplantation until a donor heart is available
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Interventional Cardiac
Catheterization
The MUSC Children’s Hospital has two pediatric cardiac catheterization laboratories staffed by two dedicated
pediatric interventional cardiologists. We perform approximately 600 cardiac catheterizations each year. Our
interventional cardiologists consistently use leading edge techniques and equipment to prevent or postpone high
risk, complex cardiac surgery. These procedures do not require a surgical incision and the patient is often able to
go home the same day or the following day. Interventional catheterization procedures can be used to repair the
following defects:
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Atrial septal defects (ASD) and patent foramen ovale (PFO)
Ventricular septal defects (VSD)
Patent ductus arterosus (PDA)
Coronary artery fistulas
Mechanical perivalvar leaks
Catheter deployed pulmonary valve placement
Balloon valvuloplasty for pulmonary and aortic valve stenosis
We commonly intervene with high-pressure balloon angioplasty, cutting balloon angioplasty, and balloon
expandable stenting to address blood vessel narrowings including pulmonary artery stenoses, aortic coarctation, and
systemic venous stenoses.
Our team also performs numerous hybrid interventions wherein surgical and transcatheter techniques are combined
in selected patients to provide the optimal, patient specific cardiovascular solution.
Our outcomes for catheter-based therapy are among the best in the country and we are actively participating in the
first national registry for congenital cardiac catheterization laboratories, the IMPACT registry, which is an American
College of Cardiology National Cardiovascular Data Registry (ACC-NCDR).
The MUSC Children’s Hospital has been a leader in the field of interventional pediatric cardiology since the early
1990s. We are currently co-investigators in several national studies including the MAGIC national intervention
database, the Congenital Cardiovascular Interventional Study Consortium, post market FDA trial for the Amplatzer
Duct Occluder II device, post-market FDA trial for the Amplatzer Septal Occluder device and Ventricular Septal
Occluder device, and the PARC study for covered stent placement in the pulmonary position. The MUSC
Children’s Heart Center was the first congenital heart disease program in the United States to perform device
closure of multiple ventricular septal defects with real-time, 3 dimensional (3D) echocardiographic guidance, and is a
leader in the field of novel imaging guided interventions such as 3D transesophageal echocardiographic intervention
guidance.
The physicians in the congenital cardiac catheterization laboratory were the first in the state of South Carolina to
perform catheter-deployed valve implantation, making MUSC Children’s Hospital the statewide leader in catheterdeployed valve technology. To support these efforts, MUSC opened a state-of-the-art hybrid catheterization suite
specifically for patients with congenital heart disease in November 2013.
8 MUSC Children’s Heart Center
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Echocardiography
Echocardiograms provide pediatric cardiologists and cardiac surgeons with the best way to diagnose congenital heart
defects. The Pediatric Echocardiography Laboratory at MUSC enjoys national recognition for excellence in diagnostic
capabilities. Since 2001, we have been one of a select group of pediatric echocardiography laboratories with continuous
accreditation by the Intersocietal Commission for Accreditation of Echocardiography Laboratories (ICAEL). We perform
over 8,000 echocardiograms annually. When necessary, for younger patients or those with developmental disabilities,
we work closely with our pediatric cardiac anesthesia colleagues to provide sedation services for echocardiograms. Our
goal is to provide the most pleasant experience possible for the children and their families. One area of special interest
and expertise is three-dimensional echocardiography, a new modality, with which most centers around the country only
have passing acquaintance. At MUSC, we have integrated 3D imaging into our studies because the targeted use of 3D
echocardiography is an invaluable addition to our diagnostic capabilities. Our surgeons find the added information from 3D
imaging very helpful in repairing complex heart defects. We have developed an international reputation for our expertise
and research contributions in this area. As part of our mission to educate our colleagues, we regularly conduct training
workshops and symposiums. Our echocardiography laboratory performs transesophageal echocardiograms to guide
surgery and transcatheter interventions.
Fetal Cardiology
A large proportion of children with heart defects can now be
diagnosed in early pregnancy. While this is a difficult time
for families, we are committed to ensuring that they obtain
as much information as possible to prepare themselves for
the baby’s birth and subsequent course. We work closely
with a statewide network of obstetricians, maternal-fetal
medicine experts, pediatric cardiologists, and surgeons, all
of whom work together to ensure the best possible level
of care. Regardless of where they live, our goal is to have
the mothers of babies with critical heart disease deliver at
MUSC in order to minimize postnatal transport and the
resulting medical and emotional stress to both mother and
baby. Mothers visit MUSC for detailed imaging of the
baby’s heart and confirmation of the defect. At this visit,
we define the maternal follow-up, timing, and mode of
deliveries, and the post-delivery plan for the baby. After this
visit, the mothers go back home and continue follow-up with
their local physicians until the planned time of delivery at
MUSC. Dr. Sinai Zyblewski, Director of Fetal Cardiology,
and Frances Woodard, CPNP, our Fetal Coordinator, help
to ensure the continuity of care. Ms. Woodard and our social
workers help families to obtain affordable housing for the
days and weeks ahead.
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Advanced
Cardiac Imaging
The Children’s Heart Center of South Carolina is one
of the few pediatric centers in the country to possess
state-of-the-art programs in both cardiac computed
tomography (CT) and cardiac magnetic resonance
imaging (cMRI). Utilizing precise protocols which are
specifically tailored for patients with congenital heart
disease, the cardiac team at MUSC is able to evaluate
cardiac anatomy and function in order to optimize
surgical planning and treat patients more effectively.
Working in collaboration with the Department of
Radiology, the Heart Center benefits from cutting-edge
imaging technology. MUSC has the most advanced
scanners in the industry, allowing for highly accurate
images of the beating heart while minimizing radiation
exposure. The physicians at MUSC have led ground-
breaking research into imaging protocols and are
currently involved in projects evaluating techniques to
minimize radiation exposure in children undergoing these
studies. Furthermore, these new scanners are specifically
designed with patient comfort in mind. A wide tube
design minimizes claustrophobia, allowing us to image
patients who previously would have required sedation or
anesthesia. Additionally, the MRI scanner is equipped with
headphones, allowing the patient to listen to music during
the study. Images and functional information acquired
from these studies are processed and analyzed using the
most advanced image processing software available. This
software allows the cardiologist to construct 3D images
of cardiovascular anatomy, which is then shared with the
treating physician and cardiac surgeons in order to tailor
management strategies.
The Pediatric Cardiac Intensive Care
Unit and Cardiac Step-Down Unit
The Pediatric Cardiac Intensive Care Unit (PCICU) is a 12-bed state-of-the-art area specifically designed and
staffed with experts in the field. The physicians and staff provide comprehensive care for complex medical and
surgical patients from newborns to adults. The PCICU is one of only a few intensive care units in the country
that are dedicated exclusively to pediatric heart care. The PCICU is equipped to provide the highest complexity
therapies, including the administration of inhaled nitric oxide and employment of mechanical cardiac support such as
extracorporeal membrane oxygenation and ventricular assist devices. Our multidisciplinary team has a specific cardiac
focus and includes specialized nurses, respiratory therapists, a pharmacist, clinical assistants, clinical nutritionists,
occupational, physical and speech therapists, as well as specifically trained physicians in pediatric cardiology and
critical care medicine. The environment promotes a culture of safety. The PCICU boasts hospital acquired infection
rates well below the national average, with no central line associated blood stream infections or ventilator associated
pneumonia in over a year. The unit has its own waiting room dedicated solely to families with a child in the PCICU. It
is complete with computers with Internet access, televisions, a private consultation room and a private lactation room
for breastfeeding mothers. This waiting room is staffed by a guest relations specialist who assists families with lodging,
transportation, and other needs. Visit www.musckids.org/pcicu to read more about this unique area.
The pediatric cardiac step down unit provides highly specialized patient care for children not requiring an ICU. This recently
remodeled intermediate care unit features 14 private rooms with in-room sleeping available for family members. Similar to
the PCICU the team is made up of specialists from many disciplines – all with a specific pediatric cardiac focus and all of
whom promote excellence. Despite the numerous central lines this unit manages due to the need for vasoactive infusions,
they boast an amazing three years without a single central line associated blood stream infection.
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Electrophysiology and
Ablation Services
Adult Congenital
Heart Disease
Today, more than 95% of the children born with congenital heart disease will survive to adulthood. These adults represent
a growing population of patients who have pediatric-like heart disease but face the usual issues of adult life – education,
work, marriage, and family. Their issues often require the expertise of specialists who understand both the complex nature
of their heart conditions as well as the medical and social issues faced by young adults. To address these needs, the MUSC
Children’s Heart Center has developed a program with a combined management team consisting of adult and pediatric
cardiac specialists who can provide both perspectives. This multidisciplinary approach has proven to be the best way to care
for this group of complex patients.
M U S C ’s A d u l t C o n g e n i t a l H e a r t P r o g r a m u t i l i z e s :
The MUSC Children’s Heart Center provides comprehensive evaluation and management of arrhythmias in the fetus,
infant, child, adolescent, and adult with congenital heart disease in the inpatient and outpatient setting. All-inclusive
rhythm assessment includes standard electrocardiograms, 24-hour ambulatory Holter monitors, and transtelephonic event
monitoring. Additionally, more invasive services are provided including tilt table testing, transesophageal pacing studies,
intracardiac electrophysiology studies and ablation, implantable loop recorder placement, and pacemaker and defibrillator
implantation. With more than 1500 ablations performed at MUSC, we have great outcomes with an overall success rate of
98%. The Arrhythmia Service provides:
• Adult and pediatric trained cardiologists
• Adult and pediatric interventionalists
• Congenital cardiac surgeons
• Advanced cardiac imaging
• Echocardiograms
• Electrophysiologists
• Nurse Practitioners
• Radiofrequency ablation during which radio waves are delivered through the tip of a catheter to heat a small area of the
heart muscle responsible for maintaining an arrhythmia.
• Cryo-ablation during which the catheter tip freezes the abnormal heart tissue, similar to heating with radio waves. One key
advantage of this technique is reversibility when first applied, making it safer for some arrhythmias than the radiofrequency
technique. The Children’s Heart Center at MUSC pioneered this technique in 2003, just a few days after it was approved
for use in the United States.
• 3D computerized mapping and ablation using St. Jude - Endocardial Solution’s mapping systems, providing state-of-theart tools for treating the most complex rhythm abnormalities in the most complicated patients.
• Actively follow over 200 patients with implanted devices both in clinic and remotely
Heart Health Program
Heart Health is both the pediatric weight management program of the MUSC Children’s Hospital and the preventive
cardiology service of the Children’s Heart Center. A family-centered and lifestyle-oriented program, Heart Health
is appropriate for any child or adolescent who has abnormal weight gain and/or cardiometabolic risk factors such as
dyslipidemia, elevated blood pressure, or pre-diabetes.
Heart Health provides comprehensive, individualized weight management and cardiovascular risk factor counseling for
patients aged 2 to 22. Heart Health teaches families how to improve lifestyle behaviors in order to manage weight and
improve cardiometabolic risk. The program is directed by Melissa Henshaw, MD, and delivered by Janet Carter, MS, RD,
and Molly Jones, RD.
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Research
History has shown that the best way to optimize patient care is to take what we learn in research labs and apply it in a way that
enhances patient care. That is the vision of the Charles P. Darby Children’s Research Institute (CRI). Opened in February 2005, the
CRI is the largest and most comprehensive pediatric research facility in the Carolinas and one of only 15 in the country. The work
being performed in the 150 state-of-the-art laboratory modules raises the level of care not only at MUSC Children’s Hospital, but
throughout the entire region. It allows our hospital to translate cutting-edge research into the latest treatments for children of South
Carolina. The 121,000 sq. ft. building provides space for researchers in 14 programs, each with investigators representing multiple
departments and disciplines.
The faculty of the MUSC Children’s Heart Center realize that participation in both laboratory and clinical research is the path
toward a better future for our patients and their families. We are involved in a wide variety of projects with the hope for future
impact and have received numerous grants to support these projects, including:
• 8.75 million dollars in ongoing research support with nearly six million dollars from the National Institutes of Health (NIH)
• Understanding the basic development of the heart with the potential for identifying methods to modify the structure of the heart
for a “natural” repair
• Bioengineering tissue structures, such as vessels or valves, made from a patient’s own cells to use in a surgical repair
• Understanding and modulating the inflammatory response to cardiopulmonary bypass
• Computational modeling and pressure volume loop analysis to better understand and manage single ventricle physiology
• Investigating intestinal function and feeding intolerance in neonates after cardiac surgery
• Studying endothelial barrier function after the Fontan operation
• Participating in the National Pediatric Cardiology Quality Improvement Collaborative
• Becoming a founding member of the Pediatric Cardiac Critical Care Consortium (PC4)
• Developing and testing new techniques for catheter ablation to treat heart rhythm abnormalities
• Developing and participating in numerous clinical trials at MUSC to improve our patient care and procedural outcomes
This commitment to research is evident in that the faculty of the Division of Pediatric Cardiology have amassed an impressive
contribution to the field of Pediatric Cardiology and generated as author or co-author over the last five years (2009-2013):
• 204 papers in prominent peer reviewed journals
• 114 abstracts presented at international, national, and regional meetings
• 30 chapters in prominent textbooks
• 310 invited talks to share their expertise at international, national, and regional meetings
The Pediatric Heart Network
The Pediatric Heart Network (PHN) is a collaboration of clinical sites and a data coordinating center that conducts research studies
in children with congenital or acquired heart disease. It was established in 2001 by the National Heart, Lung, and Blood Institute
(NHLBI) of the NIH. The PHN was created to help design and carry out clinical research so that children with heart disease can
receive high-quality, evidence-based care.
The major barriers to clinical studies in pediatric heart disease include small numbers of individuals with a particular congenital
heart defect at any one center, differences in treatment approaches, and a lack of resources to provide national coordination of
collaborative research. The Network approach attempts to address these barriers by offering an effective, flexible way to study
adequate numbers of patients with uncommon diseases through a common infrastructure for recruiting, monitoring, and following
patients whose conditions will be characterized in a standard fashion. Centers with experienced research teams at hospitals that
specialize in the care of pediatric patients with heart disease were chosen to become part of the PHN.
The Medical University of South Carolina is 1 of 9 core centers in the PHN, and 1 of only 5 centers that
have been a core center since its inception.
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Fellowship
Training Program
The Pediatric Cardiology Fellowship Training Program at MUSC has been accredited
by the ACGME since 1970. It has been supported by a Training Grant from the NIH
since 1994. We train our fellows to become the leaders of tomorrow in the areas of
patient care, teaching, and research. Our fellows have a strong record of academic
productivity in clinical research. Over the past several years, current and former fellows
of our program have secured a number of national honors that attest to their excellence.
These honors include:
• Eight fellows obtained grant funding to further their careers in clinical research at
MUSC: from the NIH, the American College of Cardiology, the American Heart
Association, the American Society of Echocardiography, the American Academy of
Pediatrics, Mend a Heart Foundation, and Leducq Foundation Transatlantic Network
for Cardiovascular Research
• Six fellows have completed a Masters of Science in Clinical Research
• Six fellows have obtained grants from the NIH as part of the highly competitive
NIH Loan Repayment Program, which rewards fellows who dedicate their careers to
academics
• Nine fellows have been selected as finalists at Young Investigator Competitions, and
have been invited to present their research at national meetings
• On numerous occasions, our fellows have been awarded travel grants by national
societies to attend their meetings across the country
Our program’s success is indicative of our highly supportive academic environment, rich
in mentorship and the spirit of scientific enquiry.
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Family-Centered Comprehensive Care
Nursing
The pediatric cardiac intensive care unit, step-down unit, cardiac catheterization laboratories, and
same-day observation unit are all staffed by registered nurses with expertise in managing children
with heart defects. They have the training, skills, and desire to help deliver the best patient - and
family-centered care, regardless of patient age. Our nurses are part of an active multidisciplinary
team dedicated to preventing and minimizing pain and distress as much as possible. Behavioral
and psychological techniques are used whenever non-pharmacological and pharmacological
treatments are used, with the goal of preventing and minimizing pain without simply “medicating”
the child.
MUSC has been designated a Baby-Friendly Hospital by Baby Friendly USA. Only 6% of United
States birthing hospitals have achieved this designation. This recognition means that MUSC is
dedicated to promoting successful breastfeeding when mother and infant are medically stable.
Additionally, when an infant is not able to breastfeed, MUSC staff will support mothers to express
and store milk to be available when the infant is medically ready to feed.
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Family-Centered Comprehensive Care
Family Support and
Waiting Services
Hospital, medical, and surgical experiences can be upsetting, and stressful for children and their families. The
staff at MUSC Children’s Hospital recognizes we are not simply treating the heart disease, but caring for
the whole child and his or her family. The team utilizes their skills to support and promote the developmental
progress and emotional well-being of children and their families. This is accomplished through child life
specialists and the Child Life Atrium.
Child Life Specialists
Child Life staff have specialized training and experience in understanding children’s reactions to illness
and hospitalization. The Child Life department is staffed by professionals who hold degrees in child life,
child development, education, and related fields. The purpose of the Child Life Program is to encourage
emotional well-being and normal development in healthcare settings through the use of play, education, and
support. The goals of the Child Life department are to:
• Facilitate play opportunities at the bedside and in playrooms that enhance continued growth and
development
• Create a sense of normalcy by helping children maintain independence, self-esteem, and control
• Minimize stress by encouraging positive coping behaviors
• Help children prepare for and understand medical procedures and experiences
Child Life Atrium
The Child Life Atrium is a safe haven where there are no invasive medical procedures or questions. It
includes age-specific areas designed to meet the interests of infants and toddlers, school-age children, and
teens. Additional support for the family includes:
• Chaplains available around-the-clock to assist with the spiritual and emotional needs of children and their
families
• Social workers and case managers to assist with financial and practical resources for families
• An on-site teacher available to help children continue with school work during hospitalization
• Interpreters available 24 hours a day to facilitate communication with families of all ethnic backgrounds
• Accommodations in the nearby Ronald McDonald House available for families with children in the PCICU
• Private cardiac step-down rooms designed with children in mind, with in-room sleeping available for family
members
• A location convenient to lodging, shopping, dining, historic attractions, and beaches for family-time away
from the hospital
• Access to Carepages, an online personal tool that parents can use to post updates on their child’s recovery
and receive support
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Access to Care
Referring a
Patient
To make a referral to one of our specialists at the Heart Center, please contact MUSC’s dedicated
consultation telephone service, MEDULINE, at 1-800-922-5250 or (843) 876-CARD (2273) in the Charleston
area. Representatives are available to assist you 24hours-a-day, 7 days-a-week. They will put you in immediate
contact with the cardiac specialist you need to assist with care management prior to transport and arrange all
transportation. You can also visit physicianportal.muschealth.com/refer to make a referral online.
We work closely with all referring physicians, as evidenced by the Children’s Heart Program of South
Carolina’s design. We encourage collaboration with our colleagues in the management of patients and
understand the importance of keeping the primary cardiologist abreast of their patient’s condition. We are
very aware of the emotional support a family receives from a simple “hello” from their primary physician.
We are sensitive to the physician-to-patient relationship and encourage families to return to their primary
physician after treatment. Our team will continue to work with the referring physician after treatment with any
support needed to ensure the highest level of patient care.
MEDUCARE
MEDUCARE is MUSC’s highly skilled and dedicated pediatric and neonatal transport team – available
around the clock to transport patients from referring hospitals who need immediate medical intervention.
Depending on the needs of the child, MEDUCARE arranges emergency medical transportation using its own
hospital-based, on-site helicopter, plane, or ground ambulance services. All transportation modes function
as mobile intensive care units with much of the same equipment as that in our PCICU. The transport team is
pediatric-trained and equipped to provide child-specific care during transport. It is often possible for a parent
to travel with his or her child.
Insurance Information
The MUSC Children’s Hospital is dedicated to working with health insurance providers and other payers to
offer convenient, hassle-free access to our premier Children’s Heart Center.
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MUSC Children’s
Hospital Highlights
The Medical University of South Carolina Children’s Hospital is dedicated to enhancing the
health of children and providing an environment that supports excellence in pediatric patient care,
teaching, and research. Our hospital was planned, designed, equipped, and staffed with children in
mind. Here, families will find the most comprehensive pediatric care available. Our clinicians and
staff offer a full range of care to children of all ages, from the tiniest of newborns to teenagers —
with many of our services and physicians ranked nationally by U.S. News and World Report and
Best Doctors. Every member of our staff is driven by a commitment to excellence and a desire to
provide the most advanced care possible for children. Our health system covers the state with an
extensive network of physicians, health care professionals, and services all dedicated to children.
The Children’s Heart Program of South Carolina
Since the earliest days of congenital heart surgery, all of the specialists caring for children with
heart disease in the state of South Carolina have worked together to coordinate care and
provide the best possible outcomes to our patients. Today, more than 30 pediatric cardiologists
throughout South Carolina and 2 pediatric cardiac surgeons in Charleston provide that
coordinated care. Cardiology groups are based in four locations — Charleston, Columbia,
Greenville, and Florence — with outreach clinics in a variety of other statewide cities. Outstanding
outcomes coupled with an individualized approach to each patient has resulted in referrals now
coming from across the Southeast as well as many foreign countries. To optimize the care of
the most critically ill patients, all surgical and catheterization procedures are performed in the
Children’s Heart Center at the MUSC Children’s Hospital. This system allows for the highest level
of care by the specialized teams described in this brochure while still ensuring that most of the
patient’s care is delivered closer to home. This coordinated approach is unique to our state and we
are proud to work so closely with our statewide colleagues to provide it.
26 MUSC Children’s Heart Center
26
27
The Children’s Heart
Program of South Carolina
Charleston-Medical University of South Carolina
Andrew M. Atz, MD
Robert H. Anderson, MRCP
G. Hamilton Baker, MD
Varsha Bandisode, MD
Scott M. Bradley, MD
Ryan Butts, MD
Nicole Cain, MD
Shahryar Chowdhury, MD
Geoffrey Forbus, MD
Eric M. Graham, MD
Craig Greene, MD
David Gregg, MD
Dieter Haemmerich, PhD
Melissa Henshaw, MD
Anthony M. Hlavacek, MD
Minoo Kavarana, MD
Kyu-Ho Lee, MD, PhD
Kimberly McHugh, MD
Arni Nutting, MD
J. Philip Saul, MD
Andrew J. Savage, MD
Mark Scheurer, MD
Carolyn Spencer, MD
Sinai Zyblewski, MD
Division Director
Visiting Professor
Interventional Cardiology
Interventional Cardiology
Cardiothoracic Surgery
Heart Transplant/Cardiomyopathy
Electrophysiology
Echocardiography, CT
Echocardiography, Cardiac ICU
Director, PCICU & Fellowship Program
Outpatient Cardiology
Adult Congenital
Cardiac Research
Preventive Cardiology, Obesity
Director, Pediatric CT; Echo/MRI
Cardiac Research
Outpatient Cardiology
Director, MRI; Echocardiography
Electrophysiology
Director, Heart Failure/Transplant
Director, Outcomes Research; PCICU
Director, Echocardiography
Director, Fetal Program; PCICU
843-792-3287
843-792-3287 843-792-3292 843-792-3292
843-792-3361 843-792-3292 843-792-3287 843-792-4473
843-792-3279 843-792-3287 843-792-3287
843-876-4788 843-792-1396 843-792-3300 843-792-8704 843-792-3361 843-792-0307
843-792-3292
843-792-3279 843-792-3287
843-792-3279
843-792-3294
843-792-3279
843-792-8704
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
Ali Burnette, RN
Patricia Infinger, CCRP
Janet Carter, MS, RD
Jennifer Reeves, PA-C
Cathy Rubinstein, MSN,FNP
Angela Sczypta, PA-C
Frances Woodard, MSN, CPNP Transplant Coordinator
Clinical Research
Coordinator, Heart Health
Pediatric Cardiology
Pediatric Nurse Practitioner
843-792-4438 843-792-7857 843-792-4717 843-792-3361 843-792-3361 843-792-5877
843-792-3289
[email protected]
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[email protected]
803-434-7980
803-434-7940
803-434-7940
803-434-7940
[email protected]
[email protected]
[email protected]
[email protected]
843-777-7300
[email protected]
864-454-5120
864-454-5120
864-454-5120
864-454-5120
864-454-5120
[email protected]
[email protected]
[email protected]
[email protected]
[email protected]
Patient Scheduling
800-343-1983
843-792-2273
Columbia – Richland Memorial Hospital
Sharon J. Kaminer, MD
C. Osborne Shuler, MD
Matthew Wienecke, MD
Luther C. Williams, MD
Florence – McLeod Hospital
Charles A. Trant, MD
“My daughter was diagnosed in utero with a rare congenital heart defect and we were given very bleak odds.
For the first six months of her life, MUSC was our home away from home. We were not sure we would ever
be able to bring our baby home. Words cannot express the gratitude that I feel toward the nurses, doctors,
and staff at MUSC. Aside from their amazing expertise in the field, the pediatric cardiology team showed us
an unbelievable amount of compassion and support. We were faced with the most difficult decisions of our
lives and they educated us about our daughter’s condition and always took the time to answer our questions.
They provided patience and humor when we needed it, and provided hope in what seemed to be a hopeless
situation. They not only cared for our daughter, but for me and my family in a very difficult time. In caring for
my daughter, they held my heart in their hands, and I wouldn’t have it any other way. ”
Tara Bennett, Spartanburg, SC
“The Pediatric Heart Program at MUSC has been a complete blessing
to our family for over 6 years. Their immense knowledge and unparalleled
compassion in caring for their patients and families is, by far, the best in the
pediatric cardiology field today.” Scott and Rebecca Butcher, Chapin, SC
“South Carolina is blessed to have a Children’s Heart Program that
combines a dedicated Pediatric Cardiothoracic ICU, cutting edge
technology, and world class individuals that go above and beyond to not
only care for our children but for the families as well. The care our daughter,
Emerson Rose, and my wife and I received during our 11 weeks at MUSC
is one of the reasons we decided to do all we can to encourage and support
the work of people we now consider family by starting the Emerson Rose
Heart Foundation™.” Jason and Susan Smith, Clemson, SC
Greenville – Greenville Hospital Systems
Benjamin S. Horne, MD
Jon Lucas, MD
David G. Malpass, MD
Manisha Patel, MD
R. Austin Raunikar, MD
28
Pediatric Cardiology Pediatric Cardiology
For consultation or referral, call MUSC Meduline at
843-876-CARD (2273) or toll-free at 1-800-922-5250.
www.MUSCkids.org/heart

MUSC Children`s Heart Center

Transcription

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