Moving Forward

So its been awhile since I wrote last. It was when I found out 2 of my kids have Brugada like me. It was also the day I got my mothers test results confirming she was negative and it was my father who gave me the Brugada gene, which took his life. I already had figured that out being he died suddenly at 55 and his mother, my grandmother, had several fainting episodes. But finally knowing after all these years what ended his life was nice closure. So where am I at now? Well I know my grandmother fainted a lot. She must have had Brugada and passed it to my father, although she did live to be 86, so that is promising. My father, unfortunately must of had the gene and it didnt end well at all. These are just pieces to a puzzle Ive been working on for years. We know Brugada doesnt skip generations so thats why I am lining this up. Then comes me.I test positive for the gene, have a Type 1 EKG and now an ICD. So that is 3 generations of BrS I know of. Now I am entering the 4th generation with my children. I have 5 children so it would have been catastrophic if they all had it. But it still hurts just as much that any have it. It has a hereditary rate of 50% which is very high. So I wasnt surprised. My family was optimistic to the point of it angering me because I have researched and researched this and knew how likely it is to be passed down. I told them all, “I bet 2 or 3 have it” and damn it, I was right. No one listens to me.

So now what? Well, they have normal EKGs and no events came up on monitoring. Isnt that good news? Well, most kids have no symptoms. So, again, Im not surprised. Brugada sneaks up on you later in life. Symptoms and bad EKGS come out later. Its possible to come during youth, but not as probable. Is it good news they dont need an ICD right away? Sure it is! Does it mean they will never need one? Not at all. I was also a healthy 4 and 17 year old with no symptoms.So this is a waiting game. Wait for them to get older, monitor them over the years, and wait for the symptoms to show up and they will be in the same spot as me. All I can say is thank God for ICDs. My 17 year old will end up with an ICD sooner because of her age and because my symptoms showed up in my early 20s. She is perfectly fine with it because she knows its needed and it will save her life. My 4 year old knows nothing. I told her nothing and dont plan on it until shes older. Why bog her down with serious matters she could never grasp? My hope is being she is so young, at some point, there will be a cure or a pill and an ICD wont be needed. A day when Brugada is conquered.

For now, we go to the doctor every 6 months and get EKGs and holter monitors and EKGs while they have a fever to see if they can uncover a bad EKG. We follow the rules….watch the heat, look out for fevers, keep hydrated, mind your electrolytes, stay active and heart healthy. Thats about it. Of course if symptoms show their ugly face sooner, intervention is needed. For now, follow the rules, take an external defibrillator where ever we go, keep an eye on the medicinal ” do not take” list and see the doc.

All thats left to do is let go and trust God. Let go of the thought that its my fault, “cant I change it? Why did it hapoen? What if this happens? What if they die? What if it happens in their sleep?” If I can throw all that shit out of my head Ill be better off. Thats where God comes in. I have Brugada and have 5 kids, a home, a wonderful husband and a happy life. Brugada didnt defeat me and God has held my hand through it all. He is right next to my children holding their hands as well. Let go, and let God!!

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6 Comments (+add yours?)

  1. Anonymous
    Aug 06, 2013 @ 20:08:13

    wow Alicia what a beautiful Blog… thanks for bringing awareness about this to many whom don’t know about it.. God Bless you & yours ❤

    Reply

    • aliciatburns
      Aug 06, 2013 @ 20:35:37

      My only hope is to save a life. I know what its like to lose someone to Brugada. I know what its like to have it and an ICD and now I am a mother of kids with Brugada. If something I write somehow saves a life, Its all worth it 🙂

      Reply

  2. Carolyn Thomas
    Jul 23, 2013 @ 20:16:28

    Great! Will send you a draft copy first to make sure I’ve got all my facts straight before it’s published on Heart Sisters.
    cheers,
    C

    Reply

  3. Carolyn Thomas
    Jul 23, 2013 @ 14:06:55

    Hello Alicia – what a story! Especially finding out that two of your kidlets have Brugada, too. Wow!

    I’m assuming that most women are as uninformed about Brugada as I am (although since my heart attack, I’ve become pretty well informed about lots of heart stuff – just not Brugada until discovering your blog).

    I’m writing a new post about this diagnosis for my “Heart Sisters” readers – and would like your permission to quote some of the content in your blog. You can reach me by leaving a comment at http://myheartsisters.org/contact-m/

    cheers and thanks,
    Carolyn Thomas

    Reply

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