Adeline's Story 

Each year, Children’s Miracle Network (CMN) Hospitals selects ten patients to represent the impact of its 170 member hospitals. Local Duke Children’s patient, Adeline, has been selected to serve in this role in 2024. Adeline and her family will attend special events throughout the country representing CMN Hospitals, meeting with corporate partners, and sharing her personal story. 

When Adeline was born, her heart experienced arrhythmias. Her doctors weren’t overly concerned, but as a precaution they sent Adeline for additional screenings at Duke Children’s. At Duke, Adeline’s family received a staggering diagnosis. 

Dr. Salim Idriss, a Duke pediatric electrophysiologist, diagnosed Adeline with Long QT Syndrome (LQTS), a rare and sudden arrhythmic death syndrome that is difficult to detect because the first symptom is usually death. Had it not been for Duke, chances are Adeline’s parents would have brought her home thinking she was healthy, only to find her dead in her crib one morning.

LQTS isn't curable, but it can be managed. Dr. Idriss put Adeline on a strict medication regimen. She also had open heart surgery when she was seven days old to implant a therapeutic pacemaker

Dr. Idriss’s news didn’t stop with Adeline. LQTS is a genetic disease, and because Adeline had it, it meant one of her parents did too. Based on his medical history, Dr. Idriss determined that Adeline’s father, Aaron, was the carrier. It was a miracle that he was still alive, and he was quickly connected with a Duke cardiologist to manage his LQTS.