Darcy Carhill, LQTS Type 5
We are now Thryv.
LQT Therapeutics Inc. has changed its name to Thryv Therapeutics Inc.
Darcy Carhill is a 36 year-old married mother of two daughters, Skyla Rayne and Aria Lee, ages 7 and 2, who owns and operates a Hair salon, Darcy’s Shear Edge, in Chandler, Arizona.
She also has Long QT Syndrome (LTQS) Type 5, which she’ll occasionally document along with her family life on Instagram.
Recently, Darcy visited with LQT Therapeutics to develop a Q & A about her LQTS experiences.
When were you diagnosed with LQTS, and how did your diagnosis come about?
When I was pregnant with my daughter, Aria, I had a very normal pregnancy up until I was at about 36 weeks. At 36 weeks my obstetrician ordered an ultrasound and a stress test to be done - to that point I had lost about 20 pounds since becoming pregnant, which was thought to be okay, but I should've started gaining back a little.
During the ultrasound, they discovered the baby was about three weeks behind schedule on growth, or weight. I was sent to a high-risk clinic for a more thorough ultrasound and a two-hour stress test. At this appointment they decided to send me to the hospital for induction, and explained that the baby was fine, but that she would be better off arriving early and gaining the weight she needed “on the outside.”
I was 37.5 weeks. We went to Banner Gateway Medical Center (Gilbert, Arizona) and got settled into Labor & Deliver. There, they started me on cervidil, and 12 hours later, while labor had started progressing, the determination was I needed another round of cervidil. After it was administered, I fell asleep, as did my husband who was in the room.
My husband, Beau, was awoken by me making weird noises in the bed, and he realized that I was having a seizure. He ran to go get a nurse, and by the time they got into my room I had coded - my heart had stopped. The team of nurses did chest compressions and shocked me, getting my heart beating again, but I was still very unstable and kept suffering episodes of Torsades. My heart stopped for 25 seconds just nine minutes before my daughter was born.
A doctor who worked in Labor & Delivery, but was actually off that day, happened to be in the department delivering valentines cards and gifts to the nurses, so he quickly jumped in and performed an emergency cesarean section. I did not go to the operating room; the procedure was done in the Labor & Delivery because it was too risky to move me. Aria was born at 1:18pm on Valentine’s Day, 2018. She was 4 lbs 15oz, 18 inches long, and was perfectly healthy.
At that point I was intubated, and had a lot of tests done to try and figure out what had happened to my heart. I was able to meet and hold Aria for the first time on February 15th, but only very briefly. She had to stay in the NICU at Gateway, and I was transferred to Banner Desert where they have a Cardiovascular ICU.
Once there, a lot more tests were performed and they discovered that I suffered sudden cardiac arrest due to Long QT Syndrome, a condition I had never heard of before. A few days later I had surgery to have a Medtronic pacemaker and defibrillator installed, and was sent home 12 hours later. Aria was released from Banner Gateway at the same time and we were finally reunited at home.
How did you feel upon hearing your diagnosis? What were your most immediate thoughts?
To be perfectly honest, I don't remember anything from the time we checked into the hospital to the time I was released. Even the next couple of weeks recovering at home are still pretty hazy. I don't have any memory of meeting and holding my daughter for the first time. I do have pictures and videos of it, for which I am so thankful for and will cherish forever.
The only thing I wanted or cared about during that entire time was my baby. I just wanted to be with her, and I couldn't … that was the worst feeling in the world. Seven days after my implant, I had a cardiology appointment and then was finally able to process what had happened. A lot of different emotions flooded over me, but my main question was, and still is, how did I go 33 years and not know I could literally fall over and die from sudden cardiac arrest with zero warning whatsoever from a heart condition that was never detected?!
It is still very surreal to this day.
Meeting Aria for the first time.
You had your defibrillator and pacemaker implanted in 2018. Since then, how have you and your medical team managed your condition?
My cardiologist is amazing, and I will forever be grateful to him for saving not just my life, but my daughter’s also. I see him once a year for an electrocardiogram (EKG or ECG), and to have my device tested. They also have me set up on a remote monitoring system, so they remotely check my device from my home every three months. I am also on 40mg of Nadolol daily, which is a beta blocker. So far, I haven't had any complications.
Has LQTS changed your life and if so, how?
I have to say the biggest change I’ve had to get used to, and sometimes still struggle with, is the large hunk of metal in my chest. It is definitely something I am self conscious about!
I have also just become used to listening to my body more, and being aware of slight changes in my heart rate. I would say at least a few times a week, I can internally feel when my pacemaker “kicks in” and starts beating my heart for me. I’ve had my husband touch it to see if he can feel it or hear it, and he can't. It’s just a very weird feeling, but it also makes me thankful for my device.
You’re a wife, mother and business owner - what’s a typical day for you?
Everyday is a busy day!! Haha, never a dull moment.
We have my step daughter, Skyla, every other week, and right now we are distance learning due to COVID-19, so that has been a big challenge. Aria is now two and a half years old, and she's a spitting image of her daddy, but spunky and sassy just like me. My husband works full time, and I work anywhere between 20-35 hours a week doing hair in my own little studio. We are grateful for my mother-in-law who comes over to watch the girls when both of us are at work.
What are your life’s passions, and how do you pursue them?
My biggest passion in life, aside from being a mom, is making people feel beautiful. I have been a stylist in Chandler, Arizona for almost 18 years, and my clients mean the world to me. Most of them have become more than “just” clients; they are friends, and I truly care deeply about each and every one of them. The feeling I get when I turn the chair around and see their smiling faces, is truly what makes me most happy. I joke that I am an underpaid therapist, but all of my clients have absolutely been there for me through the years as well!
How are you hoping that sharing your patient journey story will help other LQTS patients and their caregivers?
I feel like sharing my story is the least I can do. I feel very fortunate that I was in the hospital already when this happened to me. My cardiologist has said several times that had I not been there, this episode probably still would have happened, and the outcome would not have been the same.
I have virtually met so many others who suffer from LQTS, and still today I am grateful for that; just knowing that I am not alone has helped me to process this over the years. If I can in any way help someone else overcome hurdles, whether they be emotional or mental, I absolutely will.
Also, I would love to bring awareness about how important genetic testing can be. After my episode, I did genetic testing to find the exact mutation I have, and that’s when we found out I have Type 5. The company that did my genetic testing then offered to test two immediate family members for free. My daughter Aria was tested when she was 11 months old, and my older sister Davery was tested as well. Both came back positive for carrying the same gene mutation. Neither have been diagnosed with LQTS, but they both see a cardiologist once a year for monitoring and EKGs.
For me, just knowing they have the gene and at any moment they could face sudden cardiac arrest is empowering - knowledge is power - and this alone could save their lives.
Thus far, I have only ever met (virtually) one other person with Type 5, it seems to be the rarest type of LQTS. Once we connected I was able to send her my genetic results and she told me so much more that I hadn't understood prior. We keep in touch periodically, and it’s really nice to have someone out there who knows what I’m feeling and going through.
Here is a link to the Channel 12 News story about us. Here is a link to a Banner Bedside Stories Podcast that was done; ours is Episode 2 : The Best Worst Day of My Life.
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