Exploring the Major Unanswered Questions in Heterotaxy
In this panel, Sarosh Batlivala, MD, MSCI, Jo Wilson, MD, Elle Geddes, MD, and Adam Shapiro, MD, discuss some of the major unanswered questions facing Heterotaxy researchers and clinicians.
Defining Heterotaxy
Dr. Tal Geva walks through definitions as we seek to classify what Heterotaxy really is.
FHT2025 Full Recording: Thursday Afternoon
Full recording of Thursday afternoon family sessions (October 9, 2025) at Facing Heterotaxy Together 2025. Individual session recordings are also available.
FHT2025 Full Recording: Thursday Morning
Full recording of Thursday morning family sessions (October 9, 2025) at Facing Heterotaxy Together 2025. Individual session recordings are also available.
Nutrition and Tube Feeding
Beth Gore from the Oley Foundation addresses some of the unique challenges that come with nutrition and feeding in the presence of Heterotaxy.
Fever Protocols, Immunizations, and Antibiotic Prophylaxis
Learn from Dr. Douglas McDonald as we seek to understand up-to-date recommendations for immunizations and treatment protocols. This includes what, when, and why antibiotic prophylaxis is used, and considerations important when deciding to continue or discontinue treatment.
Airway Clearance Workshop
Learn about various methods and tools to assist with airway clearance for those with and without Primary Ciliary Dyskinesia.
Natural History Registry: Citizen Health
Heterotaxy Connection Executive Director Necia Sabin details our partnership with Citizen Health in collecting natural history data that patients can query as needed.
IEP and 504 Plans for School
Rene Harrell teaches about the difference between IEPs and 504 plans and helps us understand how to leverage these plans to help students be successful in school.
Rare But Mighty: Building Community in Isolation
In this panel discussion, Karli Richards, Monica Bloom, Maggi Curry, and Cristina Co share their journeys to growing community in a journey that can often be so isolating.
Neurodevelopment
Aimee Lybbert, MSW, LSWAIC, helps us understand the implications of complex medical conditions like Heterotaxy on neurodevelopment and shares strategies for helping children cope.
Second Opinions
Second opinions can change the course of treatment and help find answers. In this session, Rene Harrell provides insight on how to obtain opinions from other hospitals.
Heterotaxy as a Whole and Palliative Care: Part 2
Heterotaxy affects the whole body and the whole family, and requires a care team that takes this big picture perspective into account. In this session, Dr. Shih-Ning Liaw and Chelsea Heneghan, MSN, CNP, part of the palliative care team at Boston Children’s Hospital, will explore how palliative care fits into this holistic approach. They’ll discuss what palliative care is, how it differs from and complements other types of medical care, who is eligible to receive it, and how families can access these services.
Heterotaxy as a Whole and Palliative Care: Part 1
Heterotaxy affects the whole body and the whole family, and requires a care team that takes this big picture perspective into account. In this session, Dr. Shih-Ning Liaw and Chelsea Heneghan, MSN, CNP, part of the palliative care team at Boston Children’s Hospital, will explore how palliative care fits into this holistic approach. They’ll discuss what palliative care is, how it differs from and complements other types of medical care, who is eligible to receive it, and how families can access these services.