An Educational Symposium Sponsored by Akron Children’s Hospital and the Cleveland Clinic
Ira B. Taub, MD, FACC, FAAP
The sudden death of a young person is a twofold tragedy, with the unheralded loss of a young life compounded by uncertainty about its cause. Families must manage both their own grief and concern for the well-being of other loved ones. Anxiety often spreads to the community and can trigger a cascade of diagnostic testing that is expensive and of questionable clinical value. On February 7, 2020, Akron Children’s Hospital hosted a symposium for professionals who are involved in the difficult process of investigating sudden cardiac death in the young. Co-sponsored by Cleveland Clinic Children’s, the event targeted physicians on the front lines of the process as well as allied professionals who interact with bereaved families.
Dr. Sampson explains NYC’s molecular autopsy protocol to the audience
The day began with a Grand Rounds talk given by Barbara Sampson, MD, PhD, Chief Medical Examiner of the City of New York. Dr. Sampson’s office, tasked with investigating deaths in a city of over 8 million people, operates the largest DNA laboratory in the nation. She has developed a protocol that allows for meticulous gross, microscopic and genetic testing of all decedents in whom a cardiac cause of death is suspected. Where a genetic abnormality is identified, appropriate follow-up with genetics and cardiology is arranged for all family members. This has allowed for the identification and treatment of clinically silent but potentially dangerous conditions in many family members. Variants of uncertain significance and novel mutations can be investigated as part of an ongoing research effort.
For the first plenary session, “When A Child Dies,” the audience heard powerful accounts from two mothers whose own children were the victims of sudden cardiac death. Stephanie Kornet shared the story of her 17-year-old son, Alec, who died after collapsing during a high school hockey practice. Christa Poole’s, LISW-S, son, Devin, a senior at Kent State University, collapsed and died suddenly during a pickup basketball game. In both cases, the initial shock of the loss was compounded by a lengthy process beset by communication difficulties and unanticipated financial and insurance barriers.
To read the full article, please go to the May 2020 Issue of CCT.