Tag: Milestones May 25

Share Your Science – May 2025

Exciting papers and national guidelines authored by CNOC members Brosig C, Bear L, Wolfe K Diagnosis and intervention strategies to address neurodevelopmental and psychosocial challenges in school aged children with congenital heart disease. JAHA 2024 November. https://doi.org/10.1161/JAHA.124.035985 Jones CE, Desai H, Willette S, Negrin KA, Glotzbach K, Butler SC. Thickened feeds for infants with critical […]

Announcements

Program and Meetings Committee Update The Program and Meetings Committee has been diligently working to plan CNOC’s 13th Annual Scientific Sessions “Climbing to New Heights in Cardiac Neurodevelopmental Care & Research” happening September 17-19 in Denver, Colorado. Call for abstracts and nominations for the Newburger-Bellinger Cardiac Neurodevelopmental Award and the Cardiac Neurodevelopment Advocacy and Engagement […]

2025 is Off to an Exciting and Productive Start

By Nadine Kasparian PhD MAPS and Cynthia Ortinau MD CNOC Steering Committee Co-Chairs Hello and welcome to our Spring update! We’re excited about sharing news from the Cardiac Neurodevelopmental Outcome Collaborative (CNOC). Introducing a New CNOC Task Force We’re thrilled to announce the launch of a new CNOC Task Force, led by Erin Beckemeier MEd, […]

Ari Rabkin PhD

Dr. Rabkin is a pediatric neuropsychologist at Nationwide Children’s Hospital (NCH) and an assistant clinical professor of pediatrics at The Ohio State University College of Medicine. Dr. Rabkin specializes in comprehensive neuropsychological evaluations of children with congenital heart disease and other medical conditions, and provides clinic-based consultation within the Post-Fontan Clinic at NCH. He is passionate about providing support to youth and families impacted by congenital heart disease and is particularly interested in the long-term impact of early surgery on neurocognitive functioning.

 

Laura Wood PhD

Laura Wood PhD is a psychologist and Clinical Assistant Professor in the Department of Pediatrics at the University of Utah/Primary Children’s Hospital. She is embedded across the heart center and provides neurodevelopmental evaluations and psychosocial and developmental support to children and their families before, during, and after heart surgery. As a clinician, researcher, and parent of a child with CHD, Dr. Wood is committed to enhancing developmental outcomes and well-being of children with congenital heart disease and their families through clinical practice, research, and advocacy.

Ginnie Abarbanell MD

Ginnie Abarbanell is professor and chief of the pediatric cardiology division at the University of Texas San Antonio. Previously, Dr. Abarbanell has served with the Congenital Heart Public Health Consortium, the CNOC R13 Neurodevelopmental Outreach, Education and Advocacy Working Group and the CNOC Community Outreach committee.  She has had the privilege of working on public health issues related to cardiac neurodevelopment at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control (CDC). Her particular interest is in improving access to care, especially in the education system for children with CHD.  Personally, as a parent of two children with a learning difference and ADHD, Dr. Abarbanell understands the challenges many children with CHD and their caregivers experience which has shaped her passion in cardiac neurodevelopment.  Dr. Abarbanell is excited to help find and build avenues for providers, caregivers and families to advocate for children with CHD especially in regard to neurodevelopment and educational needs. 

Carissa Ostrom BS

I’m deeply passionate about advocating for the Congenital Heart Disease (CHD) community, and I believe my experience and skills align perfectly with CNOC’s mission. As the Executive Director of Conquering CHD, a patient advocacy organization, I’m intimately familiar with the challenges and triumphs of navigating the advocacy landscape. For the past year, I’ve spearheaded efforts to reintroduce and reauthorize the Congenital Heart Futures Act, collaborating with four other groups and engaging legislators in DC. My prior experience working closely with members of Congress on public health policies, combined with my time at UW Health managing administrative tasks and advocating for improved workflows, honed my communication, collaboration, and problem-solving skills, all crucial for effective advocacy. I’m eager to leverage my proven leadership, policy expertise, and strong communication skills to contribute meaningfully to CNOC’s Advocacy Committee. My passion for improving the lives of those impacted by CHD, coupled with my collaborative spirit and strategic approach, will be valuable assets in advancing CNOC’s advocacy agenda. I’m confident that my dedication, coupled with my diverse experiences and skillset, make me a strong candidate for the CNOC Advocacy Committee. I’m eager to learn, collaborate, and contribute to achieving impactful policy changes for the CHD community.

Shreya Moodley MD

Dr. Shreya Moodley is a fetal and pediatric cardiologist at British Columbia Children’s Hospital, Vancouver, Canada. She completed pediatrics residency and cardiology fellowship at the University of British Columbia. This was followed by a fellowship in Advanced Imaging, including fetal echocardiography, at Stanford University, prior to returning to Vancouver as a staff cardiologist. She is currently the Lead for the Fetal Cardiology Program and was previously Program Director for the Pediatric Cardiology Training Program for several years at her centre. She continues to be involved in teaching and educational innovation and is actively engaged in quality work and research. It is her belief that advocacy is a core competency for all effective physician leaders and she has naturally been drawn to this work in her various professional roles. This has included advocating for trainees during her role as program director, advocating for patients through work as a member of the Advisory Board for the BC Congenital Anomalies Surveillance Committee with the Ministry of Health and working directly with families as a past board member on the provincial non-profit organization, Children’s Heart Network. Most recently, this role of advocate has been in development of a proposal for a Comprehensive Neurodevelopmental Follow-up Program for children with CHD in the province of BC.

 

Kimberley Heinrich PhD

Kimberley Heinrich PhD is a pediatric neuropsychologist at Michigan Medicine and a clinical assistant professor in the University of Michigan Department of Psychiatry. As the lead neuropsychologist in the School-age Cardiac Neurodevelopmental Follow-Up Program within the C.S. Mott Children’s Hospital Congenital Heart Center, Dr. Heinrich provides neuropsychological evaluations to assess cognitive, behavioral, emotional, and social functioning of children and adolescents diagnosed with congenital heart disease. She is passionate about improving neurobehavioral, psychosocial, and quality of life outcomes for children and their families impacted by congenital heart disease. Dr. Heinrich is excited to serve as vice chair of the Communications Committee to help disseminate the important work of CNOC to providers, researchers, and heart families.

Anne Gallagher PhD

Anne Gallagher is Professor at University of Montreal where she holds a Canada Research Chair in Child Neuropsychology and Brain Imaging. She is also a pediatric neuropsychologist and scientist at Sainte-Justine University Hospital, where she leads the Neurodevelopmental Optical Imaging Laboratory. She founded the interdisciplinary research program at the neurodevelopmental cardiac clinic at Ste-Justine University Hospital and contributed to the development of clinical assessment protocols. Her research program aims at identifying early biomarkers of neurodevelopmental impairments and developing intervention strategies to improve the neurodevelopmental outcomes of children with CHD. In 2017, she received the Young Researcher Award from the Heart and Stroke Foundation of Canada for her innovative research work in CHD. In 2022, she was the local co-chair of CNOC’s Scientific Sessions in Montreal.

Marie Brossard-Racine PhD

Dr. Marie Brossard-Racine is an Associate Professor in the Faculty of Medicine at McGill University and Canada Research Chair in Brain and Child Development. Using her multidisciplinary background in pediatric Occupational Therapy and Neuroimaging, she conducts research studies at the Montreal Children’s Hospital with children with brain-based disorders and their families. During the past 10 years, her research focused on better understanding the underlying mechanisms of neurodevelopmental disorders and delineating critical periods of brain plasticity in neonates, children, adolescents, and young adults with CHD. 

Jeffrey P. Jacobs MD

Jeffrey P. Jacobs MD is a Professor of Surgery and Pediatrics in the Congenital Heart Center at University of Florida and UF Health Shands Children’s Hospital.  Previously, he served as a cardiac surgeon at Johns Hopkins All Children’s Hospital from 1998–2019.  He was a Professor of Surgery and Pediatrics at Johns Hopkins University. He performs both pediatric and adult congenital cardiothoracic surgery and has performed over 4200 operations.  From 2007–2018, he was the Director of the Johns Hopkins All Children’s Hospital Heart Transplantation Program, which has performed over 180 pediatric heart transplants and specialized in high-risk pediatric cardiac transplantation.  He was Director of the Andrews/Daicoff Cardiovascular Program at Johns Hopkins All Children’s Hospital from 2013–2018 and Chief of Cardiovascular Surgery from 2015–2018.

Dr. Jacobs has been a member of the Society of Thoracic Surgeons Workforce on National Databases since 2006 (2006–2021 and 2023–today) and served as its Chair from 2015 – 2019 and Vice-Chair (2023–today).  He also served as Chair of the Society of Thoracic Surgeons Congenital Heart Surgery Database Task Force from 2006 – 2014.

Dr. Jacobs is Editor–in–Chief of Cardiology in the Young, one of the most widely read journals dedicated to pediatric and congenital cardiac care.

Dr. Jacobs is Co-Chair of the 2023 World Congress of Pediatric Cardiology and Cardiac Surgery.

He is 2019 Past-President of the Southern Thoracic Surgical Association. 

He served as Founding Chair of the Congenital Heart Surgeons’ Society (CHSS) Committee on Quality Improvement and Outcomes from 2011–2019.

From 2007–2014, Dr. Jacobs served as Founding Secretary of The World Society for Pediatric and Congenital Heart Surgery (WSPCHS).

He is the Working Group Leader of the Heart/Heart Surgery Working Group for U.S. News America’s Best Children’s Hospitals rankings (2015–2019 and 2021–today).

Dr. Jacobs received his medical degree from University of Miami School of Medicine.

David Wypij PhD

David Wypij is Senior Biostatistician in the Department of Cardiology at Boston Children’s Hospital, Associate Professor of Pediatrics at Harvard Medical School, and Senior Lecturer at Harvard T.H. Chan School of Public Health. He has considerable experience in the leadership of biostatistical and data coordinating centers for both single- and multi-center clinical trials and longitudinal cohort studies, with special expertise in the areas of neurodevelopment and adolescent health, pediatric cardiology, and pediatric ICU management. He has served as principal investigator of several data coordinating centers, as co-investigator and senior biostatistician of numerous NIH-funded studies related to cardiac surgery clinical trials and neurodevelopmental follow-up, and as a mentor for junior researchers at Boston Children’s Hospital and graduate students at Harvard. He is an award-winning teacher and has taught courses in many areas of biostatistics and clinical trials at Harvard as well as short courses in Brazil, Gabon, Great Britain, Greece, Italy, and Portugal.

Jacqueline H. Sanz PhD ABPP-CN

Jacqueline Sanz PhD is a board certified neuropsychologist at Children’s National Health System. She is an Associate Professor in the departments of Psychiatry and Behavioral Sciences and Pediatrics at the George Washington University School of Medicine. Dr. Sanz also co-directs the Cardiac Neurodevelopmental Outcomes Program (or CANDO Program) at CNHS. Dr. Sanz’s research focuses on neurodevelopmental outcomes in congenital heart disease, especially the role of executive function in predicting quality of life.

Caren S. Goldberg MD

Caren Goldberg is a professor of pediatric cardiology at the University of Michigan. She serves as the medical director for the Cardiac Neurodevelopmental Follow-up program and the co-director of the Michigan Congenital Heart Outcomes Research and Discovery (MCHORD) for the University of Michigan Congenital Heart Center. She serves as one of the principal investigators at the University of Michigan for the work of the NHLBI-funded Pediatric Heart Network. She was part of the founding steering committee of CNOC and has served as a co-chair over the past two years. Her research interests are focused on methods of improving long-term outcomes, including neurodevelopmental and quality of life outcomes, for children with congenital heart disease. She is extremely enthusiastic about the growth of collaboration in our field and the progress of the Cardiac Neurodevelopmental Outcome Collaborative as this will enable us to more quickly answer questions, understand best practices for optimizing neurodevelopmental outcomes and advancing care for children with congenital heart disease.

Amanda J. Shillingford MD

Dr. Amanda Shillingford is a pediatric and fetal cardiologist at the Children’s Hospital of Philadelphia and Associate Professor of Clinical Pediatrics at the Perelman School of Medicine at the University of Pennsylvania.  She is the Cardiology Lead for the CHOP Cardiac Kids Developmental Follow-up Program, which has recently embarked on an expansion project to improve access to developmental care for all children with CHD.  She has a longstanding research interest in characterizing and improving the neurodevelopmental outcomes and psychosocial experience for children and their families living with CHD.  Dr. Shillingford has been a co-investigator on a number of multicenter and multidisciplinary grant funded research projects and continues to be active in outcomes research.  As a member of the CHOP Cardiac Center Family Advisory Council, the CHOP Family StEPS (starting early with psychosocial support) Program Council, and a medical advisory board member for the Bret Boyer Foundation, Dr. Shillingford is able to link her clinical experience to family centered programmatic improvements across the continuum of care.

Dr. Shillingford completed her pediatric and pediatric cardiology training at CHOP.  She worked at Children’s Hospital of Wisconsin and Nemours / A.I. duPont Hospital for Children prior to returning to CHOP in 2015.  Dr. Shillingford is excited to join the CNOC team and looks forward to the ongoing growth and collaboration of the CNOC community.

Andrea Smith BSN

Andrea Smith is the Program Coordinator for the University of Utah/Primary Children’s Hospital Heart Center Neurodevelopmental Program (HCNP). Andrea received her BS in Nursing and Psychology from the University of Utah and worked for 11 years as a PICU RN before moving to the Program Coordinator role with HCNP. In her local leadership role in HCNP she has implemented and tracked programs to improve inpatient developmental care delivery, parent mental health, family bonding and resilience, health equity, and long-term neurodevelopmental outcomes for CHD patients and families. She has been integral in overall program growth and expansion. Nationally, Andrea is an active member of the CNOC Program Coordinator Network SIG and the Program and Meetings Committee, where she was involved in planning the 2021 Utah and 2022 Montreal CNOC Scientific Sessions.

Caitlin Rollins MD SM

Dr. Rollins is Associate Professor of Neurology at Harvard Medical School and the Director for Boston Children’s Hospital’s Cardiac Neurodevelopmental Program where she cares for children with congenital heart disease from infancy into adulthood. As an NIH-funded clinical researcher, her work lies at the intersection of neurology and cardiology, leveraging brain MRI to understand the neurological substrate underlying neurodevelopmental impairment in children with congenital heart disease. Her most recent work has been focused on understanding how alterations in fetal brain development influence long-term outcome. Dr. Rollins’s clinical work as a neurologist caring for patients with congenital heart disease informs her research and supports her dedication to bring the benefits of research to children and their families.

Sarah Plummer MD

Dr. Plummer is a pediatric cardiologist at Rainbow Babies and Children’s Hospital in Cleveland, Ohio. Dr. Plummer is the Director of Quality for the Rainbow Heart Center, as well as Co-Director of the Single Ventricle Program and Director of the Cardiac Neurodevelopmental Outcomes Initiative.  Dr. Plummer’s research and clinical interests are thus in quality improvement – particularly with respect to neurodevelopmental outcomes in children with congenital heart disease, the care of the patient with single ventricle heart disease, echocardiography, and the diagnosis and management of fetal heart disease.   Given her interests in cardiac neurodevelopment and quality improvement, Dr. Plummer has been a member of the CNOC Quality Improvement Committee since 2021, assuming the role of Vice Chair in 2023.  In addition, she believes in the best outcomes for all patients and that all patients deserve to receive equitable care regardless of gender, race, ethnicity, socioeconomic status, or sexual orientation.  Given this focus, Dr. Plummer is also a member of CNOC’s Diversity and Inclusion Special Interest Group.

Chetna Pande MD MPH

Dr. Chetna Pande is pediatric cardiac intensivist at Baylor College of Medicine/Texas Children’s Hospital (TCH) in Houston, TX. She is trained in pediatric ICU and cardiac ICU. She leads the inpatient developmental care program at TCH, as well as serving as a liaison to the Texas Childrens Hospital Cardiac Developmental Outcomes Outpatient Program. Her passion is in ICU liberation, caregiver support in the hospital, and improving inpatient developmental care in an effort to improve long term neurodevelopmental outcomes in high-risk children with congenital heart disease. She also leads and collaborates in a number of clinical and research studies pertinent to neurodevelopment in patients with congenital heart disease. She is excited to serve as Co-Chair of the Communications Committee to expand the breadth, scope, and exposure of CNOC to both practitioners and families.

Julia Smith-Paine PhD

Dr. Smith-Paine is a pediatric clinical neuropsychologist at Rainbow Babies & Children’s Hospital (RBCH), University Hospitals Cleveland Medical Center and an Assistant Professor of Pediatrics at Case Western Reserve University School of Medicine. She is the primary neuropsychologist working within the Cardiac Neurodevelopmental Initiative (CaNDI) at RBCH and provides comprehensive neuropsychological evaluations for children, adolescents, and young adults with congenital heart disease (CHD). In addition, she works closely with an interdisciplinary team within cardiology to promote research, program development, and consultation for the care of children with complex CHD. Her educational background includes earning a PhD in clinical psychology from the University of Cincinnati, and completing residency and a post-doctoral fellowship in pediatric neuropsychology at Children’s Hospital Colorado and Cincinnati Children’s Hospital Medical Center, respectively. Dr. Smith-Paine is eager to advance the field’s understanding of neurodevelopmental outcomes for this population, as well as to improve clinical care for these children and their families. She is honored to continue to increase her involvement in CNOC and is excited to serve as the role of vice chair for the Communications Committee.

Richard James MSLIS

Richard James is the parent of a young adult with HLHS and is a research librarian and clinical ethics consultant at Nemours Children’s Hospital Delaware. He has been active in CHD advocacy and a contributor to CHD research for more than a decade through service in organizations including Conquering CHD, Mended Little Hearts, and NPC-QIC. Since 2022, he has been the patient/family representative on the executive leadership team of the Fontan Outcomes Network/the Single Ventricle Outcomes Network (SV-ONe).

Kristi Glotzbach MD

Dr. Glotzbach is a cardiac intensivist and the co-director of the Heart Center Neurodevelopmental Program at the University of Utah and Primary Children’s Hospital.  Dr. Glotzbach has clinical, quality improvement (local, NPS-QIC and CNOC) and research interests in inpatient (post-operative neuromonitoring, developmental care and parental engagement) and outpatient modifiers of developmental outcomes in CHD.  Dr. Glotzbach is an institutional leader in multiple QI projects aimed at neurodevelopmental practices and care delivery.  Since joining CNOC in 2016, Dr. Glotzbach has served the CNOC mission as a member of the education and training committee and the QI committee.

Jennifer Fogel MS CCC-SLP/L

Jennifer Fogel MS CCC-SLP/L is currently working as a speech language pathologist at Advocate Children’s Hospital in Oak Lawn, Illinois. She provides services in the Pediatric Cardiac Intensive Care Unit, High Risk Single Ventricle Clinic and Neurodevelopmental Follow-Up Clinic. During her more than 20 years in the field, she has specialized in pediatric feeding disorders. Her career focus has been working with infants born with complex congenital heart disease and their families in the pediatric intensive care unit before and after surgery. She has a special interest in feeding and swallowing challenges, neuroprotection interventions and neurodevelopmental support for this specialized population. Jennifer enjoys collaborating with families and medical teams to improve long-term outcomes for these infants. Jennifer has lectured across the nation and contributed to publications providing education to others on the importance of early intervention, family involvement and clinical pathways to improve oral feeding experiences for newborns with CHD. She has been involved in the Nutrition & Growth Committee Initiatives through NPCQIC and Co-Chair for CNOC’s Learning & Resources Committee. 

Justin Elhoff MD MSCR FACC

Justin is the Medical Director of the Cardiac Intensive Care Unit with Pediatrix Medical Group at Sunrise Children’s Hospital in Las Vegas, NV and a Clinical Associate Professor of in the Department of Pediatrics at the Kirk Kerkorian School of Medicine at UNLV.  He has previously worked as a cardiac intensivist at Texas Children’s Hospital where he helped develop the inpatient developmental care efforts and has led and participated in several research efforts pertinent to neurodevelopment in congenital heart disease.  He additionally serves as a CNOC representative on the Editorial Board for Cardiology in the Young.  He is also active in the Pediatric Cardiac Critical Care Consortium (PC4) as a clinical champion and member of the Audit, Program, and Scientific Review Committees.  He is excited to work within the Research Committee to enhance the role of CNOC within Cardiac Networks United and promote continued research efforts to focus on longitudinal and holistic outcome measures for patients with congenital heart disease.

Jennifer Butcher PhD

Jennifer Butcher PhD is a pediatric psychologist at Michigan Medicine and an associate professor in the Department of Pediatrics at the University of Michigan School of Medicine. Clinically, Dr. Butcher is the lead psychologist in the Birth to Age Four Cardiac Neurodevelopmental Follow-Up Program within the University of Michigan Congenital Heart Center. Dr. Butcher’s research interests include designing interventions to strengthen family relationships and to promote child resiliency and neurodevelopmental outcomes among children diagnosed with congenital heart disease.

Gina Boucher MSN

Gina is a Clinical Data Analyst for the Heart Center at Phoenix Children’s Hospital.  She has over 26 years of nursing experience including Level IV NICU and pediatric surgery management.  Born and raised on the south shore of Massachusetts, Gina graduated from New England Baptist Hospital School of Nursing in Boston and later obtained her MSN with an emphasis in Healthcare Informatics from Grand Canyon University.  In addition to coordinating data for CNOC, she also manages clinical data entry at Phoenix Children’s for IMPACT, PC4, and the ACPC Quality Network.  She is passionate about using data to support the quality of patient care.  In her free time, Gina runs a custom sugar cookie business out of her home, enjoys doing Pilates, hiking, and photography.

Joanne Bonanno MA

Joanne Bonanno is a Psychometrist at the Hospital for Sick Children in Toronto.  There she assesses children in the Neonatal Neurodevelopmental Follow-up Clinic as part of a team of neurodevelopmental experts who provide personalized care throughout the follow-up course, to optimize outcomes for neonates who have been admitted to the Cardiac Critical Care Unit and may be at risk for developmental issues, through the integration of research, education and community collaborations. She is tremendously hopeful about the positive impact that the Cardiac Neurodevelopmental Outcome Collaborative is having on children and their families facing congenital heart disease and is grateful for the opportunity to be part of the team.

Laurence Beaulieu-Genest MD FRCPC

Dr. Beaulieu-Genest is a Developmental Pediatrician at CHU Sainte-Justine in Montréal (Québec, Canada), where she is the Medical Director of the Clinique d’investigation neurocardiaque (CINC), an interdisciplinary clinic dedicated to neurodevelopmental follow-up for children with congenital heart disease (CHD).

She is also involved in several specialized clinics of the Centre intégré du reseau en neurodéveloppement de l’enfant (CIRENE) of CHU Sainte-Justine and at the Intensive Functional Rehabilitation Unit and Long-Term Care Facility of Marie Enfant Rehabilitation Centre.

Dr. Beaulieu-Genest is a Clinical Assistant Professor and Co-Director of Université de Montréal’s Developmental Pediatrics Program.

She did her Pediatric Residency at CHU de Québec, Université Laval (2009–2012) before pursuing her training in Developmental Pediatrics at CHU Sainte-Justine, Université de Montréal (2012–2014). She then completed her fellowship at the Pediatric Complex Care Program and Cardiac Neurodevelopmental Program at Boston Children’s Hospital, Harvard Medical School (2015–2016).

Dr. Beaulieu-Genest is passionate about supporting children with CHD and their family in reaching their full potential and adapting to medical, psychosocial, and developmental challenges. She is also enthusiastic about sharing knowledge with physicians and professionals involved in the care of children with CHD. She has been actively involved in CNOC’s Learning & Resource Committee since 2017.

Corinne Anton PhD ABPP

Corinne Anton PhD ABPP is a board-certified psychologist in Behavioral and Cognitive Psychology, Director of the Cardiac Neurodevelopmental Program at Children’s Health in Dallas, Texas, an Associate Professor of Psychiatry at UT Southwestern Medical Center and a licensed psychologist in the state of Texas.

Dr. Anton provides clinical care and neurodevelopmental assessment for children, adolescents, and young adults with congenital heart disease. Her role extends to programmatic development and support of the multidisciplinary Cardiac Neurodevelopmental Program. Dr. Anton serves as a supervisor for practicum students, interns, and postdoctoral fellows in pediatric health and adult clinical psychology. Dr. Anton secured and utilized funding to implement education for staff and providers in the Newborn Individualized Developmental Care and Assessment Program (NIDCAP) in the Heart Center, while also supporting two providers in completing certification as NIDCAP developmental specialists.

Jessica Cowin MS

Jessica was born with a rare and severe congenital heart defect called hypoplastic left heart syndrome (HLHS) as well as two other defects, double-outlet right ventricle (DORV) and mitral atresia (MA).  She needed a series of three palliative surgeries, culminating in the Fontan. The first was at was four days old, the second at 18 months, and the third at five years of age. At the age of 13, the doctors revised the Fontan that included a pacemaker. Three years later, Jessica was told she was going to need a heart transplant; she was just about to turn 16. The CHD/HLHS life was all she knew. Jessica did not know that a transplant was ever a possibility. On Saturday, September 25, 1999 her mom answered the phone. The transplant coordinator from the hospital told her that they had a heart for Jessica, after only three weeks on the waiting list.

Nearly ten years later, Jessica went into kidney failure, due the immunosuppressive medications she had to take, to keep her heart from rejection. Her younger sister saved her life by donating one of her kidneys. It has been 21 years post heart transplant and 11 years since her kidney transplant, in 2009. Jessica is the Manager of Research & Advocacy at The Children’s Heart Foundation. She received her Bachelor’s degree from DePaul University in Business Management and Entrepreneurship and her Masters from DePaul in Health Communication.

Erin Beckemeier MEd

Erin Beckemeier is a veteran educator and national advocate for families affected by congenital heart disease. A mother of five, including a son with complex CHD who has undergone nine heart surgeries, Erin brings both professional insight and personal experience to her advocacy. Now in her 21st year of teaching students ages 3–14, she holds multiple certifications, including early childhood special education and K–8 administration, with experience across public, private, and parochial schools.

Erin has served on the Heart Rhythm Society’s Patient and Caregivers Committee and is the chair of CNOCs Community Outreach Committee. She also contributes to CNOC’s Steering, Nominations, and Communications Committees and has served as a lay reviewer for CNOC, AHA, and The Children’s Heart Foundation. Erin also co-leads CNOC’s Task Force to improve access to resources aimed at helping patients and their families.

Through social media and support groups—such as the L-TGA and Double Switch community—Erin helps connect and equip families worldwide. She is passionate about helping parents advocate effectively so that all children with CHD can thrive in both health and development.

Frank Casey OBE MD FRCP MRCPCH BSc

Frank Casey is a Consultant Paediatric Cardiologist at The Royal Belfast Hospital for Sick Children, in Northern Ireland. He is a Clinical Professor of Paediatric Cardiology, at Ulster University and Queen’s University Belfast, and directs the congenital heart disease research programme across both universities.

Professor Casey is recognised as an international leader in researching neurodevelopment outcomes for children with CHD. In his term as Chair of The Psychosocial and Neurodevelopmental Working Group of The European Association for Paediatric and Congenital Cardiology, he promoted research and improved clinical care in this area. He has published widely and delivered many international lectures on neurodevelopment in CHD.

Professor Casey was the Northern Ireland Clinical Lead for The All-Ireland Congenital Heart Disease Network in the Years 2016 -2022 and was central to the development of this unique development in healthcare. In January 2023 he was awarded an OBE for his services to Healthcare in Northern Ireland.

Sonia Monteiro MD

Dr. Monteiro is a Developmental-Behavioral Pediatrician who is Medical Director of the Texas Children’s Hospital Cardiac Developmental Outcomes Program, a collaborative effort among the Divisions of Cardiology, Critical Care, Developmental Pediatrics, and Psychology. Under her leadership, the clinic has grown substantially since its launch in 2013 and now follows more than 1200 children with CHD. Her current research interests include exploring barriers to neurodevelopmental follow-up, improving access to interventions, and addressing parental mental health in the CHD population. Dr. Monteiro’s research has also focused on the identification of and receipt of services for children with autism spectrum disorder, including those with CHD. Dr. Monteiro currently serves as Co-chair of CNOC’s Diversity and Inclusion Special Interest Group, whose work to date has included a survey to assess provider perceived barriers to neurodevelopmental follow-up. Dr. Monteiro is a member of CNOC’s Community Outreach Committee and is involved in the building of a parent educational resource page for the CNOC website. Dr. Monteiro is actively engaged in pediatric resident and community pediatrician education in appropriate developmental-behavioral screening and management of children with CHD within the primary care medical home. Dr. Monteiro’s goal in serving as a Member-at-Large for CNOC is to add an important developmental pediatric perspective to CNOC leadership. Serving in this position would also allow her to partner with other members to improve the quality and consistency of care received by children with congenital heart disease across the country.

Samantha Butler PhD

Samantha Butler is an academic pediatric psychologist, whose focus has been directed at improving the quality of hospital care and long-term outcomes for high-risk infants through clinical innovation and investigation. She promotes resilience and adaption in medically compromised youth through intervention for children, their families, and the health care environment. She is the Director of Infant Inpatient Neurodevelopment in the Cardiac Neurodevelopmental Program at Boston Children’s Hospital, Newborn Individualized Development Care and Assessment Program (NIDCAP) professional, Co-Chair of the NIDCAP Family Committee, and Vice Chair of the Cardiac Newborn Neurodevelopmental Network (SIG within CNOC).

Thomas A. Miller DO

Dr. Miller is a pediatric cardiologist at Maine Medical Center and Division Director of Pediatric Cardiology. He previously developed and directed the Heart Center Neurodevelopmental Program at the University of Utah and Primary Children’s Hospital. He continues to be Adjunct Faculty at the University of Utah, collaborating on research initiatives regarding cardiac neurodevelopment and neonatal neurobehavior. He is a co-investigator in NHLBI-sponsored Pediatric Cardiac Genomics Consortium (PCGC) and Pediatric Heart Network (PHN) research activity. Dr. Miller’s clinical interests include fetal cardiology, echocardiography and general pediatric cardiology.

Adam R. Cassidy PhD ABPP-CN

Dr. Adam R. Cassidy is a board certified pediatric neuropsychologist and Associate Professor of Psychology & Pediatrics at the Mayo Clinic in Rochester, Minnesota. Dr. Cassidy is a scientist-practitioner whose research focuses on characterizing and promoting optimal neurobehavioral and psychosocial outcomes among children and adolescents with congenital heart disease (CHD). He is also very active in clinical neuropsychological assessment and consultation with children and families affected by CHD; serves on the Board of Directors of Camp Odayin; and is a Consulting Editor for Child Neuropsychology, The Clinical Neuropsychologist, and the Journal of the International Neuropsychological Society. 

Anjali Sadhwani PhD

Dr. Anjali Sadhwani is a clinical child psychologist at Boston Children’s Hospital and Instructor in Psychology at Harvard Medical School. She has been working with the pediatric cardiac population for the last eight years. Dr. Sadhwani specializes in conducting neurodevelopmental assessments for infants and toddlers with congenital heart disease. In terms of her research interests she is involved in the design and implementation of several research studies examining neurodevelopmental outcomes in this population. Dr. Sadhwani has been instrumental in setting up and overseeing the management of a comprehensive cardiac neurodevelopmental database at Boston Children’s Hospital.

Sarah Kelly PsyD

Dr. Sarah Kelly is a pediatric psychologist at Children’s Hospital Colorado Heart Institute and Associate Professor of Pediatrics and Psychiatry at University of Colorado School of Medicine. She provides clinical consultation and intervention services across the continuum of care including outpatient cardiology clinic and inpatient cardiac progressive, intensive, and pre/post-surgical units. She is the Director of the Heart Institute Wellness Program, the psychosocial care team, and is passionate about patient and family psychological and developmental support for children born with congenital heart disease. In particular, Dr. Kelly follows children with single ventricle hearts and their families from diagnosis through childhood and adolescence into young adulthood through the multidisciplinary Complex Congenital Heart Disease and Development Clinic, the Cardiac Neurodevelopmental Follow-up Clinic, and the Fontan Clinic. She directs a cardiology rotation for psychology trainees in pediatric health and conducts qualitative and quantitative research on emotional and behavioral outcomes and quality of life for children with heart disease.

Cynthia M. Ortinau MD

Cynthia Ortinau is a neonatologist and Associate Professor of Pediatrics at Washington University in St. Louis. Her clinical and research interests intersect fetal and neonatal cardiac disease and neonatal neurology. She is the Director of the Cardiac Neurosciences Group at Washington University, a research team studying brain development, brain injury, and neurodevelopmental outcomes of children with congenital heart disease. She is involved in several research studies using brain magnetic resonance imaging prenatally, during infancy, and throughout childhood. She has a particular interest in studying fetal brain development, including mechanisms that may affect the typical trajectory of fetal brain development for congenital heart disease patients.

Nadine Kasparian PhD MAPS

Dr. Nadine Kasparian is Professor of Pediatrics, Director of the Heart and Mind Wellbeing Center, and Director of the Center for Heart Disease and Mental Health Research at Cincinnati Children’s Hospital Medical Center. Nadine received her PhD in medical psychology from the University of Sydney, Australia and a Harkness Fellowship in Health Care Policy and Practice at Harvard Medical School. In 2008, Nadine established Australasia’s first psychology program dedicated to childhood heart disease at the Sydney Children’s Hospitals Network. At Cincinnati Children’s, her research focuses on improving neurodevelopment and mental health outcomes across the lifespan among people with congenital heart disease. Nadine serves as co-chair of the CNOC Program and Meetings Committee and research co-lead for the Fontan Outcomes Network (FON). She is associate editor of Psychology and Health, on the editorial board for Cardiology in the Young, and an author of American Heart Association Scientific Statements. Nadine also serves on the Steering Committee for the Australian National Standards of Care in Childhood-Onset Heart Disease and in 2021 was invited to join the Surgeon General of California’s Adverse Childhood Experiences (ACEs) Task Force to establish recommendations for trauma-informed prenatal care.

Kelly Wolfe PhD

Dr. Wolfe is a pediatric neuropsychologist and Associate Professor at the University of Colorado School of Medicine, the Clinical Director of Neuropsychology, and the Director of the Cardiac Neurodevelopmental Follow-Up Program at Children’s Hospital Colorado (CHCO). Her responsibilities include developing and implementing clinical protocols, research studies, and outreach education for patients, families, and providers regarding neurodevelopmental sequelae in complex congenital heart disease (CHD). Her educational background includes earning a PhD in clinical psychology from the University of Alabama at Birmingham, and completing residency and post-doctoral specialty training in pediatric neuropsychology at Nationwide Children’s Hospital in Columbus, Ohio. Dr. Wolfe is passionate about advancing neurodevelopmental research, quality improvement projects, and clinical care in complex CHD.

Shabnam Peyvandi MD MAS

Dr. Shab Peyvandi is an Associate Professor of Pediatrics, Epidemiology & Biostatistics at the University of California San Francisco with a clinical focus on fetal and pediatric cardiology. She is a funded physician researcher with a focus on neurodevelopmental outcomes in congenital heart disease. In particular, she focuses on the transection of cardiovascular physiology with brain health beginning in utero and across the lifespan. She co-directs the Healthy Hearts & Minds Program at UCSF which focuses on the long-term development and quality of life in children with CHD. She is enthusiastic about the growth of the Cardiac Neurodevelopmental Outcome Collaborative and looks forward to continuing the mission of optimizing developmental outcomes in children with CHD.