In July of 2023 we gathered, both virtually and in person in Salt Lake City, to learn from experts and from each other at our family conference.
Dr. David Schidlow
Dr. Schidlow is a pediatric cardiology specialist in Boston, Massachusetts, where he is the director of the heterotaxy program, the first and only program in the country who work as a team to care for patients with heterotaxy syndrome. Their goal is to provide a proactive approach to each patient’s care, providing regular screenings and check-ups, rather than waiting for potential problems to arise.
Dr. Christopher Broda
Dr. Broda is a cardiologist at Texas Children's Hospital. His clinical interests involve providing comprehensive care to patients with cardiomyopathies and all forms of congenital heart disease, including those with the most complex hearts. His research interests involve investigations into the outcomes in adult congenital heart disease; heart failure in adult congenital heart disease; and Fontan circulation.
Kelly Kelso, NP
Kelly Kelso worked at Primary Children’s Hospital for over 20 years before joining the Rainbow Kids Palliative Care Team in 2013. She loves working longitudinally with families to develop the goals for their child’s care that is representative of their personal values and beliefs. Kelly lives with her husband and 2 children in SLC. She loves spending times in the outdoors hiking, mountain biking and camping with her family.
Dr. Elle Geddes
Dr. Geddes is a pediatric medical geneticist who specializes in cardiovascular genetics. Her primary focus is improving the care for patients with congenital heart disease using genetics while still providing cost effective evaluations and care.
Dr. Thomas Saba
As a pediatric pulmonologist, Dr. Saba specializes in asthma, bronchiectasis, and primary ciliary dyskinesia. He has extensive experience with common as well as rare pulmonary conditions with procedural skills, including bronchoscopy, to pursue advanced diagnostic testing when a diagnosis is unclear.
Aimee Lybbert is a current Master of Social Work student at the University of Washington. Her focus of study is the impact that the illness of a child has on the individuals and relationships within the family unit. Professionally, she has worked with medically complex children as a Recreational Therapist and a social worker, but above all, it is her lives experience as a fellow heterotaxy parents that uniquely qualifies her to speak on the challenges facing caregivers and what protective factors can help to combat burnout.
Caitlin O'Connell, DNP
Caitlin O'Connell is a pediatric nurse practitioner with the Heterotaxy Program at Boston Children's Hospital.
Heterotaxy Connection board member Monica Bloom shares strategies and resources for organizing a medically complex life.
Sheradon Waits, NP
As both a nurse practitioner and mother to a child with heterotaxy, Sheradon Waits is in the unique position to share information on g-tube weaning from her perspective on both sides of the bed.
Panel: Highs and Lows of Heterotaxy
Learning from parents and patients about what life with heterotaxy looks like, from the highs to the lows.
Our second family conference in 2019 was held in Salt Lake City, Utah, and featured informative talks from experts in the medical field along with thought-provoking and emotional discussions with members of our community.
Dr. Pedro del Nido
Our keynote speaker, Dr. Pedro Del Nido, is the Chairman of Cardiovascular Surgery at Boston Children's Hospital. His pioneering work in developing techniques for biventricular conversion and left ventricular recruitment has been crucial in establishing new surgical options for children born with heterotaxy syndrome and complex congenital heart defects.
Dr. Stephanie Ware
Stephanie M. Ware, MD, PhD, is a Professor of Pediatrics and Medical and Molecular Genetics, Vice Chair of Clinical Affairs in Medical and Molecular Genetics, and Program Leader in Cardiovascular Genetics, Herman B Wells Center for Pediatric Research, Indiana University School of Medicine. Her research laboratory has made significant contributions in the areas of congenital heart defects and cardiomyopathy.
Dr. Adam Shapiro
Dr. Shapiro is a pediatric pulmonologist in Montreal, Canada, who specializes in primary ciliary dyskinesia (PCD); he’s involved with the first and only dedicated PCD clinic in Quebec.
Dr. Laura Bennett-Murphy
In the heterotaxy community, the physical effects of heterotaxy syndrome are often what we focus on while mental health takes a back seat. Dr. Laura Bennett-Murphy, a clinical psychologist at Primary Children's Hospital in Salt Lake City, Utah, is seeking to address that as she works with children who are diagnosed both with physical and mental illnesses.
Monica Bloom: Monica likes to describe life before having a child with heterotaxy as the “Pre-Lauren Era.” She fully intended to return to work as a music educator when Lauren was ready for school and had no idea that those teaching skills would prove to be more critical as tools to help cope and learn to live life with a medically complex child. As a military family, Monica has had a crash course in advocating for the best possible care in an ever-changing environment. As Monica says, "Living with our heterotaxy child has been an epic adventure, but I wouldn’t change it for anything."
Panel: Living With Heterotaxy
Life with heterotaxy looks different for every family; this panel shares perspectives from three of those families, including a teenager who has heterotaxy herself.
Hallie and Necia Munro: While heterotaxy plays a large role in Hallie’s life, she’s learned how to work with it and live her life to its fullest. She is full of sass and determination and an unparalleled love for life. As her mom, Necia learned that Hallie pushes herself far more than she would ever dare push her. This is Hallie’s journey, and everyone else is just along for the ride.
Liz Katsuleres: As the mother to Joe, a spirited 4-year-old with heterotaxy, Liz has been on a mission to let him experience as much of the world as possible. They enjoy exploring the beauty of Northern California together. Life with heterotaxy isn't always easy, but it has taught Liz to prioritize what really matters and focus on maximizing his quality of life.
Paisley Suddeth: After an incredibly hard start to life, followed by a beautiful year at home, Mallorie Suddeth faced an increasingly difficult recovery from surgery. Weeks passed, options were exhausted and even the best were puzzled by her complexity. Just as strongly as her family knew her fight wasn’t finished when she was a newborn, this time they knew that any more pushing would only be out of their selfish love and desire. The end of Mallorie’s life was nearing, but the matter of time and suffering were questionable. Her parents both held her as she flew from this life peacefully and pain free. Sometimes the hardest decisions to make are the ones that give you the gift of living with no regrets.
Panel: Heterotaxy With No Regrets
A raw, honest discussion about how to make the hardest decisions in a way that leaves you with no regrets.
Katie Elizondo: Katie's husband Nick passed away after a 29 year war with Heterotaxy in January. Katie had to choose whether or not to stand by him and be his caregiver, knowing what that would inevitably mean. It was no choice at all for her. As she says, "He was worth every heartbreaking agonizing beautiful moment."
Jenna Kalk: Although Jenna spends more time than she should thinking of worst case scenarios, she never could have predicted that her daughter Avery, at two years old and after quite a few successful surgeries, would arrest twice after her Fontan, requiring immediate placement on ECMO. After two days on ECMO with no cardiac activity of her own, all of the doctors and surgeons agreed that there was no possibility that her heart would start again or that she would survive. All of their family members came to say goodbye. Luckily, Avery doesn't play by the rules, and through her Jenna has learned that they don't have to follow them either.
Alison Chandra: After being told that the only surgical course available to her son, Ethan, was a single ventricle repair, Alison and her husband sought a second opinion from Boston Children's Hospital. It was a difficult decision, but they pursued a biventricular repair for Ethan in Boston, and after a rough recovery, they can confidently say they have no regrets in changing course.
In 2015, Heterotaxy Connection hosted our first-ever family conference with speakers from multiple disciplines relating to the care and treatment of heterotaxy patients and families.
Dr. Stephanie Ware
Dr. Stephanie Ware, from Indiana University School of Medicine, provides an overview of heterotaxy syndrome and speaks on the current research in the area of diagnosis and causes of heterotaxy.
Dr. Kimberly Risma
Dr. Kimberly Risma of Cincinnati Children's Hospital and Medical center talks with families about the dangers of heterotaxy, functional asplenia and sepsis.
Dr. David Goldberg
Dr. David Goldberg, from the Single Ventricle Survivorship Program at the Children's Hospital of Philadelphia, talks with families about a study they might be interested in.
Dr. Henry Lin
Dr. Henry Lin of Children's Hospital of Philadelphia speaks regarding heterotaxy syndrome, the Fontan circulation, and how this circulation impacts the liver.
Dr. Pedro Del Nido
Dr. Pedro del Nido of Boston Children's Hospital describes unique challenges to biventricular conversion and repair in children with heterotaxy syndrome.
Melissa Henson, child life specialist at Cincinnati Children's Hospital Medical Center, speaks regarding the role of child life during a hospital experience.