About

Katharine Press Callahan, MD, MSME, is an Assistant Professor of Pediatrics specializing in Neonatology and Newborn Services at the Children's Hospital of Philadelphia. She is also an Instructor of Pediatrics at the University of Pennsylvania School of Medicine. Her educational background includes an AB in Ecology and Evolutionary Biology from Princeton University, an MD from Johns Hopkins University School of Medicine, and a MSME in Ethics from the University of Pennsylvania. Her research focuses on neonatal genomics, including the utility and perceptions of genetic testing in neonates, as well as the impact of variants of uncertain significance on clinical decision-making. She has contributed to studies investigating parent and clinician perspectives on genomic testing, managing uncertainty in genomic results, and developing frameworks for interpreting complex genomic data in critically ill neonates. Her work emphasizes understanding the ethical, clinical, and familial implications of genomic information in neonatal care.

Research topics

• Medicine
• Pediatrics
• Intensive care medicine
• Family medicine
• Psychology

Selected publications

• Parent-to-parent recommendations for coping with congenital heart disease: a mixed-methods study

  Archives of Disease in Childhood · 2026-02-26

  articleOpen access1st authorCorresponding

  OBJECTIVES: To systematically analyse parent-to-parent guidance for those receiving a diagnosis of congenital heart disease (CHD) to inform clinician counselling and advance development of support programmes. DESIGN: We asked parents of children who had CHD requiring surgery or catheterisation in infancy about their recommendations for parents receiving a new diagnosis. We analysed responses using mixed methods. SETTING: Stand-alone children's hospital. PATIENTS: We interviewed 100 parents of children with CHD with a 96% participation rate. MAIN OUTCOME MEASURES: Qualitative themes for primary recommendations and quantitative analysis of correlation between themes and social/clinical factors. RESULTS: Parents recommended balancing tactics for taking control with strategies for adapting to uncertainty. Parents recognised the importance of acknowledging challenges (noted by 24%) but focused primarily on imperatives to move forward: (1) empower yourself with information and support (50%), (2) take care of yourself (23%), (3) trust your medical team, your child and yourself (31%) and (4) maintain a positive outlook on improvement and believe that normalcy is possible (42%). Recommendations varied little with social or clinical factors. CONCLUSIONS: Recommendations from parents provide direct advice for others facing new diagnoses and outline actionable steps for clinicians hoping to support those receiving a CHD diagnosis. Clinicians may acknowledge challenges, help parents reflect on what they can and cannot control and empower parents by providing comprehensible information and connecting them to other parents.

  PublisherOA PDFDOI

• Eliciting accurate and actionable parent preferences regarding their children’s health using discrete choice experiments

  Archives of Disease in Childhood · 2026-05-18

  article
  PublisherDOI

• Response to Sansom et al

  Genetics in Medicine · 2026-01-01

  article1st authorCorresponding
  PublisherDOI

• Parent- and Intensivist-Reported Utility for Neonatal Genomic Testing

  JAMA Network Open · 2026-04-08

  articleOpen access1st authorCorresponding

  This survey study assesses intensivists’ and parents’ perceptions of the utility of rapid genomic testing for critically ill neonates.

  PublisherDOI

• Managing the Uncertainty of “Precision” While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates

  Children · 2025-12-26 · 1 citations

  articleOpen access

  Each year, many neonates are born with genetic diagnoses that carry a range of prognoses. As the types and availability of genetic testing have expanded, neonatal intensive care units (NICUs) have served as "launching points" for their clinical application. Broad genetic testing has both improved diagnostic precision and expanded uncertainty. Genetic information may be explicitly uncertain, as in the case of a variant of unknown significance (VUS). But it is also frequently uncertain whether/how the information relates to a patient's phenotype or what it may mean for a child's future. Even without ambiguity in the diagnosis or prognosis, the significance within a clinical and familial context may be less certain. Applying the information to clinical care is complex and may engender confusion among clinicians and families as readily as it offers guidance. Since genetic testing results can impact management and, at times, end-of-life decisions, misunderstanding and misapplication of genetic results pose a significant risk. We describe a hypothetical case of an infant with congenital hypotonia and respiratory failure. The family, after discussions with the care team about medically appropriate care paths, is navigating goals of care and considering tracheostomy placement for chronic mechanical ventilation. They consent to rapid genome sequencing in hopes of better understanding the etiology and severity of the neuromuscular condition. We explore three possible scenarios following different genomic results. With each, we discuss how the results may impact decision-making about the best plan of care. We propose a framework for navigating discussions about genetic testing results with families of critically ill children. We illustrate the importance of a multidisciplinary approach with collaboration between neonatology, genetics, and palliative care. By employing the strengths of each subspecialty, providers can manage the inherent uncertainty in genetic testing results, help determine the meaning of the results to the family in the context of their child's medical care, and enhance the care and support of critically ill neonates and their families.

  PublisherDOI

• How Neonatologists Use Genetic Information

  The Journal of Pediatrics · 2025-02-13 · 1 citations

  articleOpen access1st authorCorresponding
  PublisherOA PDFDOI

• Genetic Test Utilization and Cost among Families of Children Evaluated for Genetic Conditions: An Analysis of USA Commercial Claims Data

  Applied Health Economics and Health Policy · 2025-01-08 · 2 citations

  articleOpen access
  PublisherOA PDFDOI

• Parents’ perceptions of the utility of genetic testing in the NICU

  Genetics in Medicine · 2025-02-19 · 4 citations

  article1st authorCorresponding
  PublisherDOI

• 93 Vulnerability, connections and transformation: positive and negative impacts of complex congenital heart disease on families

  Paediatrics & Child Health · 2025-12-01

  articleOpen access

  Abstract Background Children with congenital heart disease requiring surgery are at increased risk for adverse health and developmental outcomes. The negative impacts of congenital heart disease have been investigated: families often experience anxiety, depression, and traumatic stress. However, positive impacts have not described, leaving an unbalanced understanding of the reality of families. Objectives To explore parental perspectives regarding the impacts - both positive and negative - of complex congenital heart disease on their life. Design/Methods Parents of children 1-4 years old with surgical CHD that presented for cardiology clinic follow-up at a single center in 2023-2024 were interviewed. They were asked about the impacts of their child’s cardiopathy on their life and their family’s life: positive, negative or both. Through open-ended questions, parents were asked to justify their answers. Responses were analyzed using mixed methods. Results Among parents (n=100), 7% reported only positive impacts, 86% both positive and negative impacts, and 7% only negative impacts. Positive impacts included: personal growth and transformation (57%): ‘It has made us more empathetic’; stronger relationships and connections with family, friends and community (28%): ‘the community is great everyone is going through something and having a positive outlook’; and medical systems (15%): ‘deeper appreciation for what everyone here does on a daily basis’. The main negative themes reported were the trauma of the experience (27%): ‘It definitely took the fun out of the pregnancy and made it traumatic’; ongoing stress and anxiety (34%): ‘the thing that is the most difficult is that there is no end in sight to it’; loss of normalcy (29%): ‘We literally flipped our lives upside down including our jobs, our kids in order to accommodate the heart condition’. Conclusion Parents report both negative and positive impacts when living with a child with complex congenital heart disease. Understanding the challenges faced by families, as well as their sources of positive resilience is important to improve our communication throughout their prenatal, neonatal and follow-up experiences. These perspectives optimize the medical system to decrease negative impacts and harness the potential of positive impacts.

  PublisherOA PDFDOI

• Developing Parental Identity in the Neonatal Intensive Care Unit

  PEDIATRICS · 2025-07-11 · 3 citations

  article

  BACKGROUND: Parents of neonatal intensive care unit (NICU) patients become parents in a stressful, unexpected environment. These parents are at risk of impaired bonding with their infants and may experience worse mental health outcomes compared with parents of infants born healthy. A better understanding of how parents develop their identity as a parent in the NICU may facilitate improved parent support. METHODS: This qualitative study analyzed semistructured interviews with parents of NICU patients to explore parental identity development in the NICU. We applied phenomenological and narrative analytic frameworks. RESULTS: We interviewed 25 parents of 20 NICU patients. Parents described challenges inherent in becoming a parent in the NICU and ways to overcome them. Five themes emerged around how parental identity develops, including the following: (1) through performing activities, (2) by shifting expectations, (3) at transition points, (4) over time, and (5) through feeling recognized. Parents identified a difference between bonding and feeling like a parent. CONCLUSIONS: For parents of patients in the NICU, developing their personal sense of identity as a parent is a complex process, separate from parent-infant bonding. Improved knowledge of and support for parental identity development in the NICU may improve both patient and parent outcomes.

  PublisherDOI

Frequent coauthors

• Sara B. DeMauro

  Children's Hospital of Philadelphia

  26 shared

• Chris Feudtner

  Children's Hospital of Philadelphia

  26 shared

• Matthew J. Kielt

  Nationwide Children's Hospital

  21 shared

• Sarah E. Thomas

  California University of Pennsylvania

  18 shared

• Kathryn Farrell

  University of Pennsylvania

  18 shared

• Kathleen Nilan

  Children's Hospital of Philadelphia

  18 shared

• Heidi Morris

  Consumer VOICE

  18 shared

• Kathleen Gibbs

  Nationwide Children's Hospital

  18 shared

Education

• Fellow, Neonatology

  Children's Hospital of Philadelphia

• Intern in Pediatrics (2016-2017); Resident in Pediatrics (2017-2019), Pediatrics

  Columbia University Medical Center

  2019

• MD

  Johns Hopkins School of Medicine

  2016

• A.B., Ecology and Evolutionary Biology

  Princeton University

  2011