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HCM and sudden infant death syndrome

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kiwi Find out more about kiwi
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  • HCM and sudden infant death syndrome

    I'm newly diagnosed with mild HCM, at age 50. I suspect I can name some cases in my mother's family. Great to find this website and pick up on the stories. Many thanks to all who have contributed.

    Now I need to talk to my brother and sister about getting tested too. Both of them have teenage children, so there are some futures at stake.

    My baby neice died at 11 weeks. Has there been any research done on HCM and sudden infant death syndrome (also known as cot death)? Could this have been a contributing factor?
    kiwi

  • #2
    Re: HCM and sudden infant death syndrome

    I'm not sure of any correlation between sudden infant death and HCM but I'm also not sure that it can be ruled out. Welcome to the HCMA. I hope you learn a lot here. Feel free to ask any questions or post any concerns. We are here to help.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: HCM and sudden infant death syndrome

      I've never heard of any correlation, or actually even given it any thought until I read your post. Interesting question though.

      My sister died of SIDS back in 1970. My brother and I both have HCM.

      Rene'

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      • #4
        Re: HCM and sudden infant death syndrome

        Thats is a very good question, I would think someone in that field should jump on that one My sons father had a sister who died from sid too any how. Besides do they even had a clue to what causes sid in infants and what is the youngest sudden death related to hcm documented? and here's another good how many parents is there out there how have lost there to udden death/vt at a young age like say 12 or younger I lost my son to sudden death/vt at 6 ears old, totally unexpected at school. Is there anyone who wants to share memorys on that good or bad .
        Jen

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        • #5
          Re: HCM and sudden infant death syndrome

          it is not argued that HCM is A cause of SOME SIDS however there is a lack of liturature on the topic. I know stories of infants through 5 yrs old who die in their sleep and later we find a family member with HCM.

          It is clearly and area that needs research.
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Re: HCM and sudden infant death syndrome

            Along this same line, I have wondered about miscarriage rates. Are they higher in HCM? Has anything been done on this?

            Rhoda

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            • #7
              Re: HCM and sudden infant death syndrome

              It's really sad to hear when babies die... I just don't understand

              I'm still confused when it comes to death I suppose..

              Wish you all the best,

              Nigel
              I cannot fear death, because when dead, death does not exist. Love is the reason for being, it can never be taken away nor lost, so hold on I will, and in death I will not part, but rejoice for the time I’ve had with you.

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              • #8
                Re: HCM and sudden infant death syndrome

                Death is so hard when anylife is lost let alone one of a child or a miscarriage but I do wonder if there's a connection there as well, there's still so much to learn on hcm yet.
                Jen

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                • #9
                  Re: HCM and sudden infant death syndrome

                  Kiwi,

                  This is a very interesting topic indeed, and i agree with Lisa that further research is needed. It certainly stands to reason that infants born with HCM could very well constitute a significant percentage of total SIDS-related deaths and even miscarriages, as Rhoda suggested. I wonder if anyone is currently even conducting research in this area. This may be something that our future med students here (Nigel?) may get the opportunity to address.

                  Good discussion... thanks for raising the question.

                  Jim
                  "Some days you're the dog... some days you're the hydrant."

                  Comment


                  • #10
                    Re: HCM and sudden infant death syndrome

                    I expect when the final causes of SIDS are discovered, it will not be the result of a single cause, but a whole list of medical conditions and combinations of situations which all contribute to what we now call Sudden Infant Death Syndrome. In all probability it will include elements which cause at least some of the still births and miscarriages also.

                    I think this subject should indeed be studied – but in the realm of what can be done to prevent or minimize the death rate. I would think it would be fruitless to detail a condition further, once it has been discovered that controlling that particular situation is beyond our current ability – at least at that time. Once we develop the ability to deal with a condition or situation, I think it would then be the proper time to examine it fully - toward finding a remedy.

                    I think of all the goofy studies that are funded which point at no particular improvement in the condition of man. I’ll bet there was even a study to determine how many wooden safety matches would self ignite when dropped on a sheet of sandpaper. I’m sure there were many meetings and theoretical discussions covering the height the matches should be dropped from, and the humidity of the air in the test area, and if they should be dropped individually or by the box load.

                    I say let’s take the money we have and address the conditions in which we can make a difference today. When we have increased our abilities to make it practicable to address
                    tomorrow’s problems, then that would be the time to work on those problems. I know I’m just barking up a dogwood tree, but I think we should maximize our chances of return today, and do it again tomorrow - when we arrive at tomorrow.

                    I stand ready to hear why we should or should not take the above approach. For one final example – we do not yet have the tools and ability to do cardiac surgery on an unborn fetus. Until we can at least envision a methodology, it would probably be a waste of money to study which cases it would benefit, and which it wouldn’t help at all.

                    What say you?
                    Burt

                    Comment


                    • #11
                      Burt,

                      I know this topic is long dead, but I have not had time to respond to it as I wanted. I guess I think that there is a different perspective for me and perhaps for others than just doing research that helps the living survive.

                      The parents of tiny babies who die often live in guilt and fear that somehow they caused it. They may even live with suspicion from family and "friends." Those of us who have lost repeated babies before they were born and perhaps had doctors say, as I did that "Maybe women who have fertility problems and then miscarry just are not supposed to have babies!" live with the fear that they have some dread disease that prevents them from having children. Thus research into this problem is research for the living - for those parents, grandparents, siblings, friends, extended family, etc. who wonder what happened and why.

                      This question is very relevant to me now as my daughter just told us that she is pregnant. I could easily live in fear of her losing this precious one as I did, knowing how emotionally painful each passing month was for me for a number of years. I hope that I will not do this, but will be only filled with joy and that no such thing will happen to her. If it should, I am glad that she will have an understanding mother to be there for her as my mother had died before this time in my life.

                      I know that you did not intentionally shut down this discussion, but I hope that you will now understand why some of us would love to know whether HCM causes miscarriages and/or SIDS in some cases, even if no baby's lives could ever be saved by our knowing.

                      Thanks for listening!
                      Rhoda

                      Comment


                      • #12
                        Rhoda,
                        First let me extend my congratulations and condolences in regard to your other posting. I truly hope you are back to your old self in the very near future and will be in top shape to celebrate the upcoming blessed event.

                        In regard to my post on this thread, I did not want to close down any discussion on this topic – in fact I ended my comments with ‘What say you?’ I can never know the devastation of what a woman goes through with the loss of an infant or even a fetus, but I’m afraid I still have to disagree with your conclusions, - but not your feelings.

                        There are many times in our lives when we look to heaven and ask ‘why,’ but the answer is not as important to my way of thinking as spending the research funds (that is in short supply) on something that will bring us closer to the cure of some malady that is plaguing us. In the long run that will hopefully diminish the number of people looking to heaven and asking why.

                        I feel that life is for the living and we must endeavor to maximize the ability for as many people as possible to live, and if that leaves the grieving short of funds – well, so be it. I understand your loss – as much as that is possible – but I feel we must keep our eye on keeping as many people as possible, as healthy as possible, for as long as possible.

                        Again, let me close by asking, ‘What say you?’
                        Burt

                        Comment


                        • #13
                          Rhoda,

                          Extent our hopes on a good pregnacy to your daughter.

                          From own however un-documented experience, your possible fears might not be completely unbased. My wife had a stillbirth 16 weeks pregnant from our child that had been dead already for some days.

                          We couldn't find a cause, there wasn't much to say about our child, except that it was a boy (you could see that without magnification ) Back then, i was not yet diagnosed with HOCM, so we were left in the dark about the possible cause.

                          Yet knowing i have HOCM (and its heriditary cause) i was reminded of the pregancies my mother had - three in total with me as lone survivor. But that's not all: according to the doctors examining the placenta that came with me, i should have been a miscarriage too! Now i was born healthy at nine months

                          So maybe, with my wife and i my genes were less favourably involved. So after all, our misfortune might have had to do with HOCM and a young heart already giving up

                          Ad
                          \"Hope is disappointment postponed\"

                          Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                          Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                          Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                          Meds (current) sotalol, dabigatran, furosemide.

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