My Son Has It

I found out yesterday my 7 month old sons genetic test is positive. Im devastated beyond words. That means 3 of my 6 kids have the gene and potential to develop symptoms. Exactly half! Exactly 50%. I don’t have much to write because Im very upset but I know all my readers have been waiting to see. I am especially scared right now in virtue of him being a male because it is much more fatal in men. After all, my father isn’t here, is he?…

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12 Comments (+add yours?)

  1. Anonymous
    Apr 02, 2017 @ 20:53:23

    My son was 36, when he died from this , He was passing out , not all the time but more then he told me. They put in a dfib, But it took his life while he was walking to his home., The dfib did work, his heart just didn’t want to work. My prayers go out to you, we are doing testing on his son.

    Reply

    • AliciaB
      Apr 03, 2017 @ 06:57:42

      I am so sorry. I don’t even know what to say. It is one of my biggest fears though…that the defibrillator wont work. Do they have any explanation as to what happened? I’m so sad for you…

      Reply

      • Anonymous
        Sep 30, 2017 @ 20:02:05

        They said when they found him, he wasn’t breathing, and applied cpr, They got his heart beating, but when I got to the hospital, they told me the electrical storm was just to big, He kept having heart attacks. They tried to bring him back a bunch of times. But he just didn’t come back. Now its 10 months later. His son for now is 13 and is okay.

      • AliciaB
        Oct 01, 2017 @ 07:29:52

        You and your family will be in my prayers. I’m very sorry oxoxo

  2. Anonymous
    Aug 12, 2015 @ 22:05:40

    Hi Alicia! So thankful to have just found your blog. My husband was diagnosed 2 years ago, and I’ve felt so alone in my anxiousness and worries… Anyway, we have 2 young sons. Wondering if you have any concerns about your children’s ability/inability to purchase life insurance in the future and also how open with your kids you are about what Brugada entails.

    Reply

    • AliciaB
      Aug 13, 2015 @ 15:40:16

      Hi there! People who have Brugada Syndrome don’t seem to be able to get life insurance. I’ve tried with 4 companies and they all said no. We are to great a risk to insure, sadly. As far as what I tell my children, it depends on the age. My 20 year old I’m honest with. She knows everything I know. My 6 year old, I just tell her she has a special heart like me that she has to see a doctor for. I tell her to drink alot, take breaks when tired and tell me or daddy if she doesn’t feel well. Otherwise I don’t say anything else. I’ve told her she MAY someday need an ICD like me but that’s all. I never mention death. My son is only 1 year but when he’s old enough I’ll tell him the same as my 6 year old. I think it’s easier for people to grow with the diagnosis rather than have it dumped on them later in life

      Reply

  3. gregoryinlees
    Apr 10, 2015 @ 14:51:38

    OMG. I am so sorry that you have so many worries now that you know about your children. I would imagine you will really need to watch out for any sports your kids may be interested in. Hope they will be interested in other things. But all in all, I bet you will have a very strong and united family. Brugada Strong! !! I have a granddaughter with a rare autoimmune disease. She is in remission for now. Wish brugada had remissions. What a lousy disease it is. 

    Marsha Gregory (Newbie)

    Sent on a Sprint Samsung Galaxy S® III

    Reply

  4. Ryan Deckert
    Apr 10, 2015 @ 10:08:55

    There isn’t much I can say to this, Alicia. My heart both breaks and goes out to you and your family…I’m sure there are no comforting words to assuage your feelings, given the situation. Maybe in the sense that your son knows at an early age and taking action will eliminate any potential incidents from occurring. Ugh! I really wish I could give you something tangible to comfort you and your son. Your dad was not aware of his heart condition was he? If not, at least your son has the knowledge of Brugada. Its not a fair situation…AT ALL. Life has proven that to us all time and again. Beyond your immediate family, know you have a support system here to vent, share, blow off steam, melt down, or whatever you need in order to help cope and get through these trying times. I am not a praying man but I am sending nothing but good thoughts and well wishes to you and your family Alicia.

    Reply

    • AliciaB
      Apr 10, 2015 @ 11:26:19

      My father did not know about it so what you say is true…there is power in knowledge.Because we know, we can survive. Its a ” pay now or pay later” concept. Pay now….know you have the diagnosis and have your life saved but suffer the emotional toil which sometimes ruins your life. Pay later by living blissfully unaware but die by 50. Hmm…

      Reply

  5. Anonymous
    Apr 10, 2015 @ 09:44:50

    It makes me sad to hear your news. As a mom with a son with Brugada, I feel your pain. Please take care of yourself & your precious family. Remember it is better to know than to not know. Prayers your way.

    Reply

    • AliciaB
      Apr 10, 2015 @ 09:56:34

      How old is your son? I find it even more frightening because he’s a boy. I’m wondering if there is a difference in protocol for male children.What is you sons medical protocol?

      Reply

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