This Mother’s Day, we want to give a huge shoutout to all of our SADS moms! Whether you have a SADS condition, or are caring for a child with a cardiac arrhythmia, we want to thank you for being the heart of our families.
Being a mom in a SADS family comes with unique challenges. “The mother’s journey is difficult – for the public eye, you have to remain strong, but many times we are worried about how we can make things good for our family and children,” says Patti, whose son Greg has CPVT. And Deena says that being a mom with ARVC is an “ever-present journey,” and that she feels like she’s a mom not only to her two sons, but to “all those who are going to come behind me with this disease.”
Here at the SADS Foundation, we’re committed to supporting all the SADS moms out there – by providing resources to help you and your kids, and creating a space where you can meet other moms who understand what you’re going through. Patti says that it can sometimes feel lonely to be a mom to a kid with a SADS condition, but “that’s what’s so great about the SADS Foundation – those moms get it.”
Can you tell me a little bit about your family’s SADS journey?
Our older son had just turned seven, and unbeknownst to us, there was an event, which presented itself as a cardiac arrest. We were very unprepared for anything that could have happened at that time. I was very, very caught off guard. He had a long journey – they worked on him for eight minutes, he didn’t have a heartbeat. The paramedics were able to bring him back, but it was a very long time, so we were very concerned. The local hospital had no idea what to do with him, so they airlifted him to a bigger trauma center.
We reached out at that time, and SADS was pretty much in its infancy, and we became very close with the people who worked there and made our journey being hand-held by them. He had his first defibrillator implanted when he was eight. And we had a lot of ups and downs with that. There were many, many years of figuring things out.
He is in the medical field now, he had a four-year degree in chemistry and went back to school and got a BSN, and now is just about finished up with his MP and his goal has always been to give back, which makes a momma very proud. The mother’s journey is difficult – for the public eye, you have to remain strong, but many times we are worried about how we make things good for our family and children. Many sleepless nights, lots of concern, but life does go on.
What are the unique challenges of being a SADS mom?
You have to remain positive, and that’s very hard as you navigate through these very turbulent times. Maybe not everybody has these ups and downs to the extreme that we had, but to remain strong, and positive, and keep the family going.
How has the SADS Foundation been helpful to you and your family?
SADS has always been there for me. It’s great support. Even the silly little thoughts I had – I was comforted knowing things from the medical side, or even just some of those people in the office, or the people I saw at conferences – they would put my mind at ease that there was a way, that this was going to work, it’s going to be okay. Reach out if you need it; you’re not alone.
Reach out – for whatever help that you need. I encourage parents to reach out to others because I’m sure that their concerns, thoughts, and worries are the same.
I was an athletic kid. Field hockey, soccer…anything to compete. My drive led me to become a cross country runner in college and I continued to enjoy running post-college. However, something changed for me in my late 20s. In 1998, I began to experience episodes of sustained ventricular tachycardia (V-tach) as high as 240 BPM and high levels of PVCs coming from my right ventricle. My doctors termed it exercise induced RVOT ventricular tachycardia and told me to ease up on the running.
Fast forward to 2006, after the birth of my second son – I decided to start running again. That lasted about a month before I went into sustained V-Tach again. By the time the ambulance arrived, I was in polymorphic V-tach with my young boys sitting in my lap on the kitchen floor. I was lucky that day. I survived.
After a number of tests, my doctors started talking about something called Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC). From my hospital bed, I found the team at Johns Hopkins ARVC program led by Dr. Hugh Calkins. I emailed Dr. Calkins directly and he wrote back and agreed to see me to confirm my diagnosis. Again, I was lucky. To be connected to a world renowned program connected to doctors and researchers all around the world, I counted my blessings.
With my ICD, a great team of doctors, and the support of the SADS Foundation, I am ready for the journey of an ARVC patient.
Do you encounter any particular challenges as a mom with ARVC?
As a mom, the most important thing for me was figuring out if my children were in danger of having inherited ARVC. Everyday I questioned whether they were safe. Working with the Johns Hopkins genetic counselors, we did genetic testing on the known current genes of ARVC. Unfortunately for me, I test as gene elusive meaning my specific genes have not been identified yet. Ongoing research means that I will test again as new discoveries are made. My children undergo periodic cardiac testing at Johns Hopkins to watch for any electrical or structural changes in their hearts. For now, they are safe. Since I still worry, I have an AED at home and became an instructor in CPR/AED usage so I can care for my boys and my community.
I encourage both patients and caregivers to be as involved as possible with their care and also with organizations like SADS. Having a community of people who understand the journey is so important. For me, I want to make sure I do everything I can do as a patient to help further the science and cardiac medicine, so that there are better management strategies for those that are yet to be diagnosed. So not only do I feel like a mom to my own children, but I feel like a mom to all those who are going to come behind me with this disease.
My SADS journey started when I was eleven, and I fainted in school. They took me to the E.R., and at that time they said it was my brain, and they did tests but didn’t give me a diagnosis. And then two years later, I passed out in a gym class again. They said that it was possibly my heart, since I’d already had tests for my brain. After all the tests, EKGs, and monitors, I was diagnosed with Long QT Syndrome, and was told I needed an ICD placed right away. I had defibrillator changes four times, and have my fourth one inside me right now. Because my mom doesn’t speak much English, I translated for her. We always had a great relationship – she was always there for me when I was young. I’m grateful that she was there to support me, and she’s still here to support me today. No matter what happens, I know she’s always there for me.
I had genetic testing done 4 times and it was negative for Long QT. And then 15 years later, after having recurrent VT recorded on my ICD, I had an EP study, and then was re diagnosed with CPVT. I had genetic testing done for the 5th time and this time it showed I had the RYR2 gene associated with CPVT. I have a bachelor’s degree in Business Administration. I also have a master’s degree in Labor Studies and an advanced certificate in Health Care Administration and Policy. I am currently working full time at a Community College.