Hello! Thank you for your response. I am so happy to hear you received your gift of life. Our son was born with severe arrhythmias and hydrops, discovered via an ultrasound at 25 weeks gestation. I began taking Flecainide while pregnant, and his symptoms and hydrops subsided. He was born at 37 weeks and it was thought he would take anti arrhythmic meds until his heart was large enough for an ablation that would cure his symptoms. His ablation at age 4 was unsuccessful in that they discovered not only did he have atrial arrhythmias as first thought, but also ventricular and junctional. Genetic testing was done by Mayo, and results showed that he has an SCN5A gene mutation, but it had a new “twist” not seen before. Simply, he has severe Long QT syndrome not well controlled by meds. He had an ICD placed at age 4 as well. He has been on different cardiac cocktails of medications his entire life. At age 7 those meds started to fail and he went into cardiac arrest (while an inpatient at Mayo). They listed him at that time at level 1A while adding Amiodarone to his meds as well as a PICC line with another med to allow his heart to rest and recover as much as it could (he was at 10% ejection fraction). While awaiting a donor, his function recovered and he was eventually listed as inactive on the transplant list. He has been taking Amiodarone for almost nine years, the longest ever out of pediatric and adult patients at Mayo. It is a dangerous med that can cause damage to other organs, which has been happening. It if damages his lungs, there is no recovery and he would be ineligible for transplant. Without other medications that will control his severe arrhythmias, it is now time for a new heart.