Heather and her son Carter

Name: Heather Darling

Age: 33

Which SADS condition do you have? Long QT Syndrome Type 2

When were you diagnosed? A little over 20 years ago

How are you treated? Beta blockers and ICD

How/when were you diagnosed?

One morning in fifth grade my mom was cutting my bangs before school (we’ve all been there, right?) and I kept pulling my head away from her. She thought I was just being a sassy preteen, so she carried on until, ultimately, I collapsed. This was the first time this had happened, so we basically chalked it up as a mere dizzy spell. My mother is an RN and was working in the Cardiology department at the time. She was working at an outreach clinic one day and it was one of those “take your kid to work” days so I had tagged along. Sine we are in a rural area it wasn’t too busy of a day so they decided they would show me how an EKG worked and hooked me up to the machine. After looking at the reading, the Cardiologist shrugged a little and mentioned that the QT Interval was a bit long and would possibly be something to keep an eye on.

Later that year my mom was attending a conference and syncopal episodes and sudden death occurrences was a main topic of discussion. This piqued my mother’s curiosity, so she decided to raise her hand and share my story with the speaker. It was at that time that she was told it was probably be best that I see a Pediatric Cardiologist as soon as possible. Appointments were scheduled and there I was meeting Dr. Mike Ackerman at Mayo Clinic for the first time. I was diagnosed with Prolonged QT Syndrome which was later further identified as Type 2 with genetic testing.

On Friday, February 14th, I underwent placement of a Subcutaneous Implantable Cardioverter Defibrillator. Unlike a traditional defibrillator, this is placed under the skin under the left armpit and a lead is tunneled into the breastbone and up to the center of the chest. No leads or wires are ever placed into the heart itself. Surgery went according to plan and I feel fantastic! Sure, I have some minimal adjustments to make to my daily life, but it was the right call to make and I am glad I did it.

What has been the biggest challenge you’ve faced living with your diagnosis?

The biggest challenge I have faced in all of this was accepting the fact that I had something going on that could potentially kill me. As an 11/12-year-old kid, that is a large pill to swallow. I went through periods where I was terrified that I really was just going to lose consciousness and never regain it. I also went through times that I thought I could make any choices I wanted without issue because I had my medication.

What is one positive thing that has come out of your diagnosis?

There is also a positive to having the LQTS diagnosis and being one of the early patients. I see the speeches given and articles written by Dr. Ackerman and I know that I really did play a part, albeit small, in all the research and advancement in the study of LQTS and other SADS conditions. The Cardiologist I see now and the Cardiologist that my son sees both recognized his name immediately because he has done so much for the SADS community and the providers that care for us.

What encouragement or advice would you give someone who has just been diagnosed with your condition?

If you are diagnosed with LQTS I would highly recommend that you stay positive. While it is something that does require some alterations and careful monitoring, it is not and end-all to leading a very full life. Listen to your body and listen to your provider. Therapies have come so far since I was diagnosed, and I think I probably could have had a better course of action in my own treatment had I continued regularly seeing a Cardiologist throughout my twenties.

How has the SADS Foundation been helpful to you?

I am thankful to have found the SADS Foundation because it has given me the tools to be sure I am making heart-conscious choices and even to make sure my son’s school is prepared to handle his condition. I am looking forward to attending my first conference in Houston in November with my mother and my son! The SADS foundation is a fantastic resource for research, advocacy and for connecting with others living with SADS conditions.