This past Sunday, my daughter-Taylor came face to face with the ugly truth of SADS (Sudden Arrhythmia Death Syndrome)- LQTS Type 2. In 2012, our entire family was genetically tested for LQTS. We tested positive for the HERG gene a rare mutation which puts us at risk for sudden death. At the time of diagnosis, Taylor had not had any warning signs or symptoms typical of LQTS Type 2. Her recorded QT on EKGs at that time was 460. The EP and cardiologists that were on our family's case felt that treatment with a daily beta blocker would be appropriate for Taylor. Taylor began beta blockers but struggled with the side affects. She decided on her own that she would stop the betas.Fast forward to this past Sunday, I can say we are so lucky to have her with us today! She survived a sudden cardiac arrest Sunday evening. Her roommate found her unconscious, blue, and not breathing- He was quick enough to act and immediately called 911- by the time the first responders arrived her heart had naturally and slowly began to revert back to its natural rhythms- and CPR was not necessary by the time the paramedics arrived. She was transported via ambulance to the local hospital and admitted.Upon arrival a 12 lead EKG revealed her QT was 525. She has been seen by both cardiologist and the EP and all appropriate tests have been run. She is scheduled for placement of an AICD this afternoon at 4pm.Taylor's birthday is on the 16th- 26 years old on Wednesday! As her mother- I am so thankful she is here with us and relieved the cardiologists are being assertive and pro active with their treatment and the decision to move forward with and AICD placement. We will be celebrating way more than just a birthday this year!!!!Taylor is a healthy very active and social, young adult. She had created the perfect combination of circumstances to lower her QT threshold which put her at a very dangerous high risk for the SCA to occur. She is an active water girl and had spent the weekend at the lake- water sports, lots of sun, alcohol consumption, energy drinks, little sleep...and dehydration were all part of the picture. I share this here in hopes to raise awareness of the dangers and warning signs of this rare genetic disease.
As I celebrate this day, here's to 17 more years symptom free.
My Journey that led to Long QT Syndrome:
My First Seizure
The Second Seizure
My Third Seizure Part 1
My Third Seizure Part 2 and Diagnosis
For more information:
Risk Estimate, Best Treatment in Long QT (I linked to this in a paragraph above as well)
Sudden Arrhythmia Death Syndromes Foundation