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.