The 2023 International Exstrophy Conference was hosted by Seattle Children’s. Realizing that care for the entire patient – beginning with appropriate surgical counseling and preparation, to psychosocial support and postoperative management – is key to successful outcomes, the sessions focused on the challenges patients and families face through a spectrum of discussions and provide tools to show that BE Doesn’t Limit ME!  

A special thank you to the team at Seattle Children’s for capturing the sessions and Gery Deer with GDL Communications for making this content available to our BE community!

From Hardship to Hope: A Global Care Experience

Presented by: Anna Artigas, Teen Advocate

Anna Artigas is a junior at Saint Edwards School in Vero Beach, Florida. When she’s not on the golf course, you can find her at the beach. Anna recently traveled to Uganda where she played a key role in a ten day surgical workshop for patients and families living with bladder exstrophy, spending 12 to 14 hours a day at the hospital, answering questions and reassuring families that the future is full of opportunities. So far, Anna has endured eight surgeries and is facing another one this July. Adopted from a Chinese orphanage at age 4, Anna is now a voice of hope for people around the world enduring a rare medical condition.

Navigating Life with Exstrophy | Surgical Approaches for Males and Adult Genital Reconstruction

Presented by Paul Merguerian MD 

Paul Merguerian, MD, is the Division Chief of Urology at Seattle Children’s and Professor of Urology at the University of Washington. Dr. Merguerian is an accomplished scholar, a committed teacher and mentor, and surgeon. His area of academic focus has been on complex reconstruction especially bladder exstrophy, and safety, efficiency, and cost within the field of pediatric urology.

2023 Courage to Shine Award Recipient

Jessica Sanchez

Born with classic bladder exstrophy, I have strived to live a life where this birth defect does not define me, it’s just a part of my story. If you were to ask anyone close to me who I am, they would tell you I am a wife, mother, sister, daughter, worship leader, administrator, friend, and a woman of faith. Life with bladder exstrophy hasn’t always been easy but in my case, I truly believe I’m one of the lucky ones. The unknown my parents experienced the night I was born ended up resulting in a journey I wouldn’t change for the world.

Keynote: BE Doesn’t Limit Me

Presented by Steve Schmith

Steve Schmith loves helping people grow and laugh. He was born with bladder exstrophy in 1973. At 50 years old, he and his wife Nikki are celebrating 23 years of marriage and looking forward to their son Carter starting college in the fall. He has spent his entire 25-year-career in the automotive industry as a strategist and storyteller, today leading automotive strategy for a digital marketing and advertising firm. He’s also an endurance athlete, racing in more than 60 events. He is training to complete a full 140-mile Ironman in 2024. Steve credits drawing on experiences living with bladder exstrophy in helping shape who he is today and the roles he plays as a husband, father, friend and professional. He’ll share his story and what’s been possible in his life because of bladder exstrophy.

Surgical Approaches for Female Exstrophy Patients

Presented by Dr Margarett Shnorhavorian

Margarett Shnorhavorian, MD, is a Professor of Urology at the University of Washington and a board certified pediatric urologist at Seattle Children’s Hospital. She is the Surgical Director of the Seattle Children’s Hospital Differences in Sex Development Program and Co-Surgical Director of the SCH level-1 CAH Comprehensive Care Center of Excellence designate by the CAH CARES Foundation. Dr. Shnorhavorian is Principal Investigator for an R01 grant from the National Institutes of Health (NIH) examining the reproductive health of childhood cancer survivors (1R01CA175216 – 01A). She has completed an NIH Career Development K-Award for Male Reproductive Health Research.

Care of the Bladder Exstrophy Patient and New Concepts in Pain Control

Presented by Amber Heberling, RN

Amber Heberling is a Seattle native who obtained her nursing degree through the University of Washington. She is proud to have been a team-member in the Bladder Exstrophy program as a part of the Seattle Children’s Hospital Reconstructive Pelvic Medicine clinic since 2017. Amber has been representing the nursing role in the US-India Bladder Exstrophy Collaborative since 2020. She is passionate about supporting patients and families, primarily through the lens of education and helping them build stronger relationships with their healthcare teams.

Prevention & Management Of Urinary Tract Infection

Presented by Dr. Scott Weissman Professor of Pediatric Infectious Disease, Seattle Children’s

Scott Weissman, MD, is a Pediatric Infectious Disease specialist and a Pediatrics doctor in Seattle, Washington. Dr. Weissman has been practicing medicine for over 26 years. His top areas of expertise are Infantile Neutropenia,Bacterial Meningitis, Neonatal Sepsis, and Urinary Tract Infection in Children. Despite being one of the most exhaustively studied free-living organisms in biology, the Escherichia coli bacterium continues to produce a massive burden of disease, including extraintestinal syndromes such as urinary tract infections (UTI) and bloodstream infections.

Gynecologic Care for the Bladder Exstrophy Patient

Presented by Dr. Angela Hernadez & Dr. Lissa Yu OBGYN, Seattle Children’s

Angela Hernandez, MD, is a native Californian who completed medical school at the Keck School of Medicine at the University of Southern California. She completed OB/GYN residency and Pediatric & Adolescent Gynecology fellowship at Baylor College of Medicine. She is interested in multi-disciplinary care, complex contraception, Mullerian anomalies and treating gynecologic concerns in medically complex adolescents. When she is not at work you can find her at Orangetheory Fitness or spending time outside with her family. Lissa X. Yu, MD, is an Assistant Professor of Obstetrics and Gynecology, Division of Pediatric and Adolescent Gynecology, at the University of Washington and Seattle Children’s. She completed residency at Yale New Haven Hospital and fellowship in Pediatric Gynecology at Cincinnati Children’s Hospital Medical Center, and previously worked as an OBGYN surgeon at Kaiser Permanente. She is involved in resident education and laparoscopic simulation and is passionate about increasing the diversity of the physician workforce through early pipeline mentorship. Her surgical videos have been presented at AAGL, NASPAG, and ASRM.

Patient Panel: This was an interactive session with those living or caring for someone with Exstrophy.

Cassandra Strunk – Diagnosis/Birth

Koleden Selanders – Middle School Child/Parent

Anna Artigas – Teen

Thomas Vincent – Young Adult

Kimberly Allen – Older Adult

Partnering with the Exstrophy Community to Improve Research Outcomes

Presented by Dr. Jennifer Ahn – Co-director, Reconstructive Pelvic Medicine Program, Seattle Children’s

Jennifer Ahn, MD, MS, is an Attending Pediatric Urologist at Seattle Children’s Hospital and Assistant Professor in the Department of Urology at the University of Washington. She completed residency at Columbia University in New York and fellowship at Seattle Children’s Hospital. She is co-director of the Reconstructive Pelvic Medicine program at Seattle Children’s and works with many families living with exstrophy. Her clinical and research interests include bladder reconstruction, health services, and health equity.

Integrating Psychosocial Support for Patients and their Families

Presented by Emily Haddad LCSW – Johns Hopkins University School of Public Health

Emily Haddad, LCSW, is a licensed clinical social worker who specializes in behavioral health support and wellness for children and families with bladder exstrophy, cloacal anomalies, anal rectal malformations, and disorders of sex development. She is passionate about educating children about their bodies, health history, and daily care to support their future goals. 

Ms. Haddad is on the medical advisory board for A-BE-C. She acts as a medical liaison among specialties, provides individual, family and group therapy as a licensed clinical therapist, and is a patient advocate and educator. Haddad received her bachelor’s from the University of Vermont in Anthropology and Sociology with a minor in Art. She completed her masters at the University of Michigan, School of Social Work where she was a graduate student instructor in Sociology. Her internships were completed at The Hospital for Sick Children, Department of Urology, in Toronto, Ontario and at Toledo Children’s Hospital, NICU. She is currently pursuing a Master of Bioethics at Johns Hopkins University in the School of Public Health.  

A Team Approach to Bladder Exstrophy Care- MIBEC

Presented by Dr. John Kryger – Chief, Division of Pediatric Urology Children’s Hospital of Wisconsin

John V. Kryger, MD, is a Professor of Urology and Chief of the Division of Pediatric Urology at the Medical College of Wisconsin and Children’s Hospital of Wisconsin. He specializes in all aspects of pediatric urology, with a special interest in bladder exstrophy, disorders of sexual development like ambiguous genitalia and complex hypospadias, fetal urology, and neurologic bladder/bowel conditions.

Dr. Kryger earned his medical degree at the University of Wisconsin- Madison School of Medicine and Public Health. He completed his residency in Urology at University of Wisconsin Hospitals and Clinics in Madison and a fellowship in Pediatric Urology at Children’s Hospital of Michigan. He was the previous Director of Pediatric Urology at UW. He was past president of the Society for Fetal Urology. 

Introduction to Mindfulness, a Unique Support Workshop

Presented by David Hlebsain, Certified Applied Compassion Trainer

David Hlebain’s professional career has spanned work in education, social work, public policy and communications. He is passionate about the role of mindfulness and self-compassion in supporting people in relating kindly to difficult thoughts, feelings and emotions. David holds a Master’s in Social Work degree from the University of Washington and a certificate in Applied Compassion Training from the Center for Compassion and Altruism Research and Education at Stanford University. He lives in Seattle.

Provider Panel

Our attendees had the chance to ask questions and hear from the many experts on our panel!