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To have children or not


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Sunnyside Find out more about Sunnyside
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  • To have children or not

    My husband and I are new to the HCM community, with a recent diagnosis (for my husband). We're in our mid thirties, without children, contemplating the risks involved with having children.
    Since we are new to this dilemma, I'm hoping to draw on the advice of some of you out there who may have faced this significant question.
    Any thoughts, both pro and con, would be greatly appreciated.
    Thank you!

  • #2
    Re: To have children or not

    Hi and welcome to the HCMA. To have children or not is a very personal issue. Many here have known about HCM from the time they were children themselves and have gone on to have children of their own. For myself, we didn't learn of my husband's HCM until we already had our three children. I think my choices would be the same whether we had known about HCM or not.

    There is a 50/50 chance he will pass the gene on to the children. Only you can determine if that is enough to keep you from having your own or not. Some of the things I would consider are his condition now, his progression, his family history, and other such matters.

    You will probably get many answers here from other posters, but it's going to be an easier thing for you just because you won't be high risk because you aren't the one with HCM. If you had it instead of your husband you would need to be followed more closely.

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


    • #3
      Re: To have children or not

      If you search the archives on this message board, you will find lots of old posts on this subject. I personally was diagnosed just before my wedding. My husband and I were torn and talked to lots of people about our decision, but we ultimately decided to go forward. Now, I am on the one with HCM, not my husband, which provided additional issues for us to consider. But for you, the choice is one that you will have to make with your husband. This is very personal and only you can decide what your value system will accept.

      In my case, we decided that everyone has some health problems in their family....we just happened to know what the one was in my family. We thought about adoption, egg donors, surrogates, etc., and decided that for us, it was worth the risk and that if and when the time came that my son developed HCM, we would deal with it then, but at least we already knew our enemy. There are no guarantees in this life, so you will have to decide what risks you and your husband can live with.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


      • #4
        Re: To have children or not

        This is something only you can decide. The chances are 50/50...are you willing to risk it? Then, on the other side, would you be happy without a child in your life. What about adoption. I could go on and on...but ultimately the painful decision is yours.

        I lost a son to HCM. He did not have children...fortunately for my daughter in law in a way. What would a 30 year old widow do with a possibly sick infant? Then, maybe it wouldn't have been sick and many times she is sorry she didn't have a child. But, you make a decision and that's it...you live with it.

        You see, life is funny. You can chase your tail and worry or just live it to the fullest. I never knew my son had HCM until he was 30. I lost him when he was 36. He gave me more happiness and love in those years than you can ever imagine. Am I broken hearted? Yes. Would I go back, knowing what I know, and NOT have this wonderful baby/child/man in my life? Never.

        We are also blessed with a beautiful and healthy 33 year old daughter. She is unmarried, but has made the decision NOT to have children. When the time comes, she will adopt. I respect this.

        I don't envy your decision. Sometimes ignorance IS bliss. Our family has no history of HCM. We never had to think about it, thank goodness.

        Best wishes to you both.
        Son died of cardiac shock second to HCM at age 36.
        Live Well...Laugh Often...Love Much


        • #5
          Re: To have children or not

          We found out about my HCM after we our first boy. We decided to go forward and now have two boys about 18 months apart.

          They are best friends. So far there are no signs of HCM, but most likely it would show up in their teen years anyway.

          I can't imagine the boys w/o each other. Best friends they are.

          Although HCM is a handicap (in a way), it is not a blocker to live life. It might be a different life than "normal", but it is a life none the less.

          We also considered that advances in treatment for HCM might make the kids life better.

          It is a tough decision for sure.

          We also went down the road of genetic testing. Haven't received my results yet.



          • #6
            Re: To have children or not

            Hi Sunnyside,

            There aren't any absolutely "correct" answers to this problem, which makes it a hard one. As Linda said, it'd be easier if you were completely in the dark.

            But since you aren't, I'd say that the better your understanding of HCM (and its inheritance), the better you can make choices that are comfortable to you. You'll find this board a very useful resource. You might also find it useful to talk with a counselor who helps people work their way though decisions like this.

            Myectomy on Feb. 5, 2007.


            • #7
              Re: To have children or not

              I was diagnosed at an early age and my husband knew my health situation before we were married. The simple truth is, I have never wanted children enough to take the risk. It sounds selfish, but there are times I have trouble enough taking care of myself, let alone a child.
              There are all kinds of options available. Explore them and whatever your decision, make sure it is the best for YOU!


              • #8
                Re: To have children or not

                You have chosen the subject matter that has no right or wrong answer. I will however give you some food for thought. Most of the people who have posted on this message board have HCM, others or loved ones or in some cases health care providers. Some of us have made the choice to have children, others if chosen not to have children. Our choices do not make us right, they are just that choices. Even the best plans are in fact fallible. In one case I know of a woman who was unable to conceive a child and choose in vitro with a sperm donor, turned out the sperm doner had HCM and didn't know. In several cases I've worked with parents of adopted children who turn out to have HCM. In one case I'm aware of a doctor told a woman because of her HCM she should not have a child and in fact abort the child and she followed her doctor's instructions only to find out later that she could have carry the pregnancy with minimal risk.
                When my sister went to her cardiologist 25 years ago and said I'm pregnant his first reaction was offering her the services of the physician who could help her with this problem and terminate the pregnancy. She went on to have two healthy children now ages 25 and 23. My own daughter was born 12 years ago, due to complications during her delivery I was advised not to do that again so she is an only child.
                Every choice has possible consequences and even the best laid plans don't turn out the way we want. But when you choose to have a child the reality is you never know what's going to happen you may have a perfectly healthy child with no medical problems at all and have a profoundly ill child's with the condition you never heard of, you just don't know.

                The potentially positive thing about knowing your husband has HCM is that you can to screen your child on a regular basis and you'll know what you're looking for, and then you can take care of what may need taking care of. Unfortunately you have lost the luxury of choosing to have a child without having to consider the potential implications of a genetic disorder when in reality it should be something each and every one of us think of regardless of HCM sometimes it can be rather profound when you know what you looking for. The phrase ignorance is bliss is quite true, but knowledge is power.

                Regardless of your choice I hope you find this message board thought provoking , informative, and helpful.

                Last edited by Lisa Salberg; 03-03-2008, 03:43 PM.
                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)


                • #9
                  Re: To have children or not

                  My motto, though said by another, it's better to live and love than to have never done either. My first husband had HCM and we knew this before we married. I never even considered not having children or the risks of our childrening inheriting the condition. We were offered genetic counseling but declinned. Little did I know I would be a widow with a 5 month old son having lost my husband to HCM at the age of 33. Would I do ANYTHING differently....NO WAY.

                  I have an absolutely beautiful, smart, compassionate, intelligent and witty 14 year old son who also has HCM. I have no regrets!

                  Life is precious, relationships can be trying, challenging and incredibly enriching regardless of how they play out or how long they last.

                  I have often wished for a crystal ball or a magic wand but neither exist. So, I try to remember to live in the here and now and enjoy every moment to its fullest! Somedays I am better at it than others. I would do it all over again in a HEART BEAT!


                  • #10
                    Re: To have children or not

                    What a very difficult decision you have before you.

                    I gave birth to my daughter before being disgnosed with HCM. My husband and I wanted more children and when asking cardiologist we were told "in time." After hearing "in time" for 7 + years, I became pregnant. My cardiologist wanted to abort my unborn son. NO WAY! God blessed us with our daughter and blessed us with another child. I had to be monitored very close and had a C section. We lost our son when he was 15 years young. We had 15 WONDERFUL years as a family. Would we do it again. IN A HEARTBEAT! Do we miss our son?? WE CERTAINLY DO, BUTTTTTTT, we have memoiies that fills our hearts and will be there forever. My daughter is 38 yrs young and has shown no signs of HCM.
                    Many diseases can be deadly. Should we live in a shell because we are afraid of disease or live a life we love with loved ones even if it is for a limited time?
                    Good luck with your decision.


                    • #11
                      Re: To have children or not

                      hmmmm . . . lots of ways to look at this. Your future children could face any number of risks: down syndrome, diabetes, mental retardation, political instability, war, and on, and on, and on. Or, you could raise kids who have a huge impact on your family, your community, your world. Maybe it is your child that finds a "cure" for HCM, or cancer, or something else.

                      Here is what I've learned from these forums: having HCM doesn't necessarily mean you're gonna die any earlier than the date that god had planned. At least you know what to watch for, where to be concerned, how to live a full life. After hearing about lots of folks living with HCM, it wouldn't stop me from having kids in the future.

                      For what its worth!

                      Andy P


                      • #12
                        Re: To have children or not

                        Thanks for all the feedback on this subject. We understand that the risk of passing on the gene is 50%, but are there any relevant statistics on the odds of the gene being expressed and if so, to what degree?

                        The other thing we wonder about is how your children feel. How do they handle the activity limitations imposed by virtue of an HCM diagnosis?


                        • #13
                          Re: To have children or not

                          Even with genetic testing, and someone as yet undiagnosed carries the HCM gene, no one can tell IF they will develop the disease and the severity of it. My children now grown with their own children, just lived normal lives knowing that every 3 years or so they would have to have an echo. I think from living with me they were not that afraid of developing it. HCM has always been a part of their lives. Yes, we are grateful they are still HCM free, but we are also grateful that they have no other diseases, that just sometime happen. Would I have them again. You bet. They have brought joy to me. (Also grandkids )

                          Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                          ICD&Pacemaker 1996
                          Heart transplant March 19, 2004 @ Mayo Rochester
                          Mom of Kaye.


                          • #14
                            Re: To have children or not

                            My son is currently 6 and does NOT currently have a HCM diagnosis. However, even if he does ever end up with one, I don't think it will change his lifestyle at all.

                            From the time he was born, we have known it was a possibility, and I have exposed him toward activities that are fine for him. I guess it helps that he is not a born athlete, and even when given the opportunity to participate in things like soccer, he opts out of them.

                            Regardless, he participates in so many after school activities that he is barely ever free. He takes karate, art classes, drama classes, science enrichment classes, robots, piano, video games, etc. I honestly think that if he was told he couldn't participate in gym class, his reaction would be hooray! But we do still try to encourage him to participate in the P.E. things at his school for now. If things change, we would rethink that, but for now, he is a normal kid.

                            My dad has HCM, and I wasn't diagnosed until my mid 30s. I had a perfectly normal childhood (although I wasn't that into sports either), and I hope that will be my son's experience as well. There are no guarantees with anything, but I will tell you that having a child for us has been well worth it.
                            Daughter of Father with HCM
                            Diagnosed with HCM 1999.
                            Full term pregnancy - Son born 11/01
                            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


                            • #15
                              Re: To have children or not

                              It is more the other way around--HCM is usually expressed and much more rarely not. You can talk to Lisa (HCMA president) for more info about this.

                              As for how your kids feel, well, it all depends. It does help some when you raise them without letting them play varsity sports and steer them toward golf, yoga, etc. or if they are just not really athletic in the first place. However, you never know. My poor cousin is 17 and a huge bruiser of a guy. Everyone he meets asks him if he plays football or basketball and he would love to, but can't. Like everything else, you are rolling the dice. I like yoga fine. You may want to search the boards for past thread about kids and kids and sports. The most virulent conversations we've had here have been about whether to let your kids play sports or not.

                              It is easier on someone if they grow up with it than those who were already in the military or planning on a sports career and then suddenly had to stop.

                              If you REALLY want kids, then HCM shouldn't stop you. Sadly, there are countless other diseases and problems that can affect you, your husband and your future children. Having HCM doesn't protect you from having other disorders (I have two other chronic conditions, for example).

                              If people let the possibility of getting cancer or kidney stones or mental illness or whatever prevent them from having kids, then we'd probably have a lot more elbow room on the planet.

                              Personally, I knew early on that kids were not for me. I understand that some women have an overwhelming biological urge to have kids. I've never had that, thank god, because it would be so hard. I am on Coumadin now, which means I can't have a baby even if I wanted one.

                              For me, one factor was also the fact that I know what it is like to grow up with a parent that is sick and in the hospital a lot. It is hard on your kids when they don't know what is going on. If you choose to have kids, don't forget that you will need to talk to them about your husband's health as it affects them--maybe dad can't play football with them or give them piggy back rides. You will need to be very open and honest with them or you risk resentment and anger and fear. Pretending that nothing is wrong with dad is much worse than the truth.

                              There is no right choice, there is only what will make you both happy and fulfilled. This is not a choice you can make over night.

                              If you only had today, how would you spend it?

                              best wishes,