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Is it fair to have more kids ?

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  • Is it fair to have more kids ?

    Hello. I'm a 42 yo previously healthy guy and was diagnosed with HCM last month. I was first seen by a cardiologist over 2 years ago ... I assume this difficulty with diagnosis may be familiar to other folks but that's a whole other story.

    We have already have 2 great kids, and of course we'll have them investigated. My question really pertains to future kids. We would love to have another kid, but I'm uncomfortable with the 50% risk of leaving HCM as my legacy. I'm well aware that penetrance and severity are highly variable. I do not relish the notion of artificial insemination nor adoption, yet I'm feeling selfish for wanting to be the biological father. Anybody else struggling with these issues ? Would amniocentisis be a reasonable compromise ??

  • #2
    Re: Is it fair to have more kids ?

    This is a struggle that many with HCM face. Amniocentisis is not a realistic option at this point for the masses with HCM as you would first need to know your mutation- only 65% have the chance to know that as we have not found all mutations yet and secondly just because someone carries the gene it does not mean they are going to have full blown HCM.

    This is a very personal choice and one that can only be made with careful consideration of the facts. Many with HCM do have children and some do not much of the choice has to do with that families personal history with HCM.

    I can offer this input; when we have a child there are many unknowns but at least if we have HCM in the family we know to look for it and we also know how to care for it once it is found. Not every medical condition is known in advance and there are no promises when you have a child that everything is going to be perfect, in the case of HCM at least you know what you have to look for. In the end it is you and your spouse that must live with the choice and you both must do so in a healthy manner that will not damage your relationship (ie no blame game can be played by one party over the other in times of anger you are both responsible for all the good and bad genetic material that made the child).

    Hang in there and call the office if we can be of assistance.

    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)

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    • #3
      Re: Is it fair to have more kids ?

      WOW!
      What timing, part of why I searched out this web site was because my wife and I are considering having a child after 8 yrs of marriage. We're 34 and the clock was ticking. I had never really thought it a good idea because of the HCM.
      I talked to my doc at my last appt. and he gave me some good advice. I don't remember exactly, but something along the lines of "have you been happy with how your life has gone even though you have always had the disease." After thinking about it, yeah my life has been pretty good, I've done and seen a lot and had more great times than bad. I still have yet to make it to Graceland though (reference to other thread).
      sam

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      • #4
        Re: Is it fair to have more kids ?

        Hi there,
        My husband and I have three children: 13, 10 and 1 year. Our 10 year old daughter was diagnosed with HCM when she was two. Both my husband and I have had our hearts checked and both of us were okay. Our 13 year old son is also okay at the moment. We were told that there was a 50/50 chance of any more children being born with HCM but we decided to go ahead and have a third child anyway. Our 1 year old was tested at 9 months and at 18 months. She is being tested again in a few weeks under sedation to confirm a suspected diagnosis of HCM (her septum is thicker than normal).
        Yes, I did question our decision when we found out that our second daughter most likely has HCM - I was surprised at how guilty I actually felt. BUT, we wouldn't change our decision for the world. God put it on our hearts to have another child and we were blessed with another beautiful daughter. No one knows what is around the corner in life and each day is precious for all of us.
        This is just another part of the journey we will travel together as a family. We only have to take one look at Isabella to know that we made the right decision. You can have HCM and still live a great life - that goes for our children too!

        All the best to you and your wife - please keep us informed of your decision.

        Kind regards,
        Alison (NZ)

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        • #5
          Re: Is it fair to have more kids ?

          Originally posted by Lisa Salberg View Post
          In the end it is you and your spouse that must live with the choice...
          I would think it's the child that has to live with that choice, isn't it?
          "Some days you're the dog... some days you're the hydrant."

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          • #6
            Re: Is it fair to have more kids ?

            I have three children, all born before we knew my husband has HCM. I've thought about this over the years and have wondered if I would've changed anything if we had known. My answer would be no. In our family HCM appears to be somewhat benign, meaning there are no family members who have suffered either through CHF, arrhythmias, premature death, or other problems. My husband does have a severely thickened septum, but it doesn't cause his daily life to be altered much. He takes atenolol daily and has an ICD since the thickened septum is one factor for premature cardiac death but the ICD has never even paced him, let alone shocked him. I think you have to take each case as an individual. Granted, not everyone within the same family has exactly the same HCM, but you can generally get a feel for what it would be like for a child who inherits it from a parent with known HCM. I hope my ramblings made sense.

            Reenie
            Reenie

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

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            • #7
              Re: Is it fair to have more kids ?

              Everybody seems to be making very good sense in answering this question, but to me the answer is a simple one; Am I glad that my parents had me? The answer of course is a resounding yes. I have inherited a great many problems beside HCM, such as Familial Hyperlipidemia which led to diabetes, five angioplasties so far, and dialysis three times a week; Hyperhomocysteinemia which causes strokes, but so far they all have been in the white matter which doesn’t effect me, along with bad lungs from smoking which I did to myself, and a number of other maladies. But with all that I am still very grateful that I was born – and I am sure that my kids are also – even though my son has already had a quadruple bypass. Life is good.
              Burt

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