Parenting and Brugada Syndrome: Two Mothers' Stories
As both a mom and daughter with Brugada syndrome, I’ve seen firsthand how this disease can affect families spanning generations. My family is lucky - my father, who was the first family member to be diagnosed, is alive and well. So far his children (my brother and me) just need to be monitored, and his one grandchild (my daughter) has not yet been touched by the disease.
But I’ve heard how others in the Brugada community have had to deal with death, disability, and fear. I wanted to get some more stories so I reached out to an online support group. Two women and mothers, Lara and Jan, share their experiences below. (Note: interviews were edited slightly for clarity and grammar but all else was preserved).
The Brugada diagnosis
I used to walk in weekly to the emergency room and I was told that it was anxiety, until one day I also had atrial fibrillation. While the cardiologist was watching my EKG another cardiologist who was studying Brugada syndrome passed by and she pointed the pattern out on my EKG.
Brugada syndrome and parenting
My parenting changed the day I was diagnosed as it triggered anxiety and panic attacks. As soon palpitations kick in, I feel scared that something will happen and I won’t manage to handle the kids. On some occasions, the ambulance has had to come while I’m with my kids so it’s given them some trauma several times.
My kids also have to undergo tests for Brugada regularly to make sure they don’t have it. No one else in my family has Brugada as far as we are aware. I do not have an ICD for the time being. I have an ILR (Internal Loop Recorder) and I am being monitored.
I guess I’ll start at the beginning. My husband of 21 years at the time worked 70 hours a week as a heavy crane operator for the railroad where he had been for 19 years. One day he got off work and drove to visit with his dad for his birthday. Dad was in the hospital 3 hours away for brain cancer. He made it to the hospital, but when he stopped at the nurse's station to see how his dad was doing, he fell face-first to the floor.
A phone call nobody wants to get
I got a call saying I needed to get to the hospital because my husband had a heart attack and had to be resuscitated. So I packed up my 2 boys who were 12 and 2 at the time and took off. The next day he had an angioplasty and they found out it wasn’t a heart attack. But something was definitely wrong so they called in an electrophysiologist doctor and did a genetic test. They found the GPD1L gene mutation.1 We were told this gene is connected with the rarest and deadliest form of Brugada syndrome.
Since my husband was down for three minutes it caused brain damage. He could no longer work and we had to file for disability. To this day he has the abilities of a four-year-old.Passed down to the next generationAfter this incident we had the kids tested. My 12-year-old didn't have it but my 2-year-old did. So after knowing this we had to take precautions with fevers, illnesses, foods, and meds. He had to be hospitalized for a fever over 100.4 and he carried an external defibrillator everywhere.When he started preschool a few years later we discovered he had delayed learning because of a lack of oxygen from the heart issue. We had to further restrict his activities: no sports because he had to avoid any blows to his chest, and he needed to be chaperoned by the school nurse or me for field trips.More surgeries and proceduresWhen he turned 10 he had a rapid heart rate so the doctors placed a coil abdominal defibrillator in him.2 When he was in 5th grade he had Supraventricular tachycardia ablation surgery because this heart rate was over 200 beats per minute when he was sleeping.3 He had robotic magnets shut off his defibrillator.The role of schoolsHe still couldn’t do sports, and we had to keep controlling his fevers. In addition, the school had to be trained each year in his condition and he needed an IEP (Individual Educational Plan). We felt nervous every single day but didn’t give up. My son is 13 years old now and doing better.I wish that doctors would learn more about this and that before the school checkup for kindergarten that they would include a blood test, so we could save many lives.
Have you ever avoided going to the doctor out of fear?