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ihss1898 Find out more about ihss1898
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  • Children?

    Lately, I have been pondering the question, Should I have children? Is that fair to myself, my fiance, or my child? I wonder how others ponder this question? For myself, I know it would be hard on me and my heart. I know that I would basically be sentenced to bed rest the entire time. But would it weaken my heart even more? What about my fiance whom wants children and a family with me. Yes, we could adopt but there are so many problems associated with that as well. For my child, is that fair to him/her to be born with the possibility of having this disease? It is treatable not necessarily a death sentence but not curable either. I mean then should people who have diabetes not have children bc they could possibly get diabetes? Anyone with suggesstions please feel free to comment. I could use some guidance in this topic

    april
    age:28,HOCM, Alcohol ablation 2002, AICD implant 2000&2004(replace)Atrial Fib, heart failure(since 2004)

  • #2
    I think this is an individual matter. Each person has to take her own situation into account, and then make her decision.

    I have a 3 year old son, and I had no real complications from my HCM during my pregnancy. I was closely monitored, saw a high risk OB, and my cardiologist was involved every step of the way.

    Before my pregnancy, I had only minor symptoms, and was not on any meds. After I gave birth, I had worse symptoms and had to get an ICD within a year or two. My gradient also got alot worse. Who knows if it had to do with the pregnancy. It might have happened anyway. As for the child, there is a 50% chance that he or she will be affected. You have to take that into consideration as well.

    You need to talk to your doctors and get their input. You sound like you have more problems with arrythmias and heart failure now that I didn't have to deal with. Those may implicate matters. Are you on coumadin? If you are, I think you have to go off of it, and it may not be safe for you to do that. You have alot to think about.

    Good luck, whatever you decide. There are lots of different options available now, from surrogacy, to adoption, etc.

    Best,

    Cynthia
    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.

    Comment


    • #3
      As i see it, two questions weigh heavily on your mind.

      First, can my (your) HCM get worse from pregnancy? Yes , it may get worse. In some cases, pregnancy can even be a sort of triggering event. Will that happen to you? Take hope and courage from the stories of other mothers on the board and make up your mind. Being a man myself, it's difficult to imagine the impact of (would be) motherhood. But it's a though question certainly.

      Second, can i (you) knowingly have my child bear a lifetime burden stemming from my inherited disease, full well knowing in advance there's a 50% change of him or her inheriting my condition. First, let me say that i admire the responsibility of your attitude in this regard. Even without a child yet concieved you take responsability for its well being.

      But, i want to try and give you some food for thought.

      Do your value your own life or the ones that gave it to you less than you would have otherwise? Most likely not, you'll be grateful and thankful to your parents they received you and fostered you. Had they known then what they do know now, would that really have made a difference for you? My own answer to that would be: no. Because the one and only thing your parents can really give - or withold - is life itself.

      The rest of it is still more or less a mystery to us, or as many of us believe, is in Gods hands. Nowadays, people tend to look very deeply into the consequences of having a child, even going so far as to 'forward think' about the way the child would eventually appreciate its own life. I think that ultimately most people (barring those with some mental disorders), even those with life-long serious disabilities fundamentally love life and are grateful to life it - even though at times they may be less enthousiastic about it.

      If you have a child, and it has HCM, i'm convinced that with a loving upbringing and respect for its limitations, it'll be as happy a child as most other childs, though naturally you and your partner will have some more to worry about. Hope this helps you in mending up your mind!

      Sinc. 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.

      Comment


      • #4
        I agree that this is a very individual matter. There are lots of women who have children with little or no problems, and there are others who have significant problems. Have you called Lisa yet? She might be able to give you good information and help you decide how to proceed.

        Reenie
        Reenie

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

        Comment


        • #5
          This is - I think - the most personal question one can face. The right answer for one is not the right answer for all. Lets talk tomorrow and see about getting YOU the best care we can - THEN lets think about children.

          Best wishes,
          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
            I can only give you my personal opinion.

            I had my first child (Melissa) when I was 17. I was not diagnosed with HCM. The doctors thought I had a rheumatic heart.

            My husband and I wanted another child. We kept asking my cardiologist when I could conceive. He kept saying, in time, in time.

            Well, 8 years later I became pregnant with my son (Michael). When I told my cardiologist I was pregnant he said, "You should think about abortion".

            My husband and I looked at each other and agreed that God blessed us with this pregnancy, we were not going to take his life. He then insisted on a C-section.

            I had to go to 2 obstratritions (?) every month and my cardiologist every three months until I got closer to my C-section date (I think I was in my 7th month of pregnancy) then it was every month.

            We had 15 wonderful years with Michael. He lived his life to the fullest.

            Would I do it over again knowing he would inherite my heart disease and only live to be 15? With the knowledge they have now about HCM, I probably would. Many people live a long life. Had we known he had HCM, it could have been treated. I had my first myectomy in 1973 and I'm still here (I wasn't quite 21 and I'm 52 now).

            I do agree with other opinions. This varies from person to person, depending on how severe your condition is and talk to your doctor.

            By all means, talk to Lisa. She has been there for many of us and I know she will be there for you, too. Talking to her is so easy. She can answer so many questions without hesitation. If there is something she isn't sure of, she WILL find out.

            Take care
            Esther

            Comment


            • #7
              The hardest question

              This is the hardest question, just slightly above "do i let my kid play sports?"

              My aunt wishes she had never had her son due to the damage it did to her heart. My mom had four kids and doesn't regret it one bit even though she is now disabled from complications of HCM (not pregnancy directly, but female surgery led to a stroke). So you never know.

              The search function can help you find lots of posts on this topic in the board.

              You ultimately have to examine your feelings about children (not your fiance's either, just yours --not that his don't count, but if you make your decision based on what he feels and not what you feel--big trouble may result).

              If you want children more than anything else, then you can make it happen. Hope for the best but prepare for the worst.

              Me, personally, I grew up with my mom in and out of the hospital and I found it very unpleasant to say the least. Especially when my parents would never talk about it. We were just supposed to "not worry." I don't recommend that route.

              Follow your heart ---pun intended!

              S

              Comment


              • #8
                Dear April,
                First let me say that I am a man and can only imagine the worries and concerns you are going through. I also have no idea what, if anything will happen to you as a result of bearing a child. Actually that is an imponderable because there is no way of measuring what will happen to your HCM if you did have a child as apposed to if you did not. We are all so different it is also hard to use the experiences of others as a guide. I’m afraid this is a question you will have to work out yourself – hopefully in conjunction with your husband.

                The point I would like to make is from the child’s point of view. Whether or not it presented itself at the time, all of us HCM’ers have had this condition from birth – and our children have a 50/50 chance of inheriting it from us. That said, I personally am very glad I was born – and I expect almost all of us feel the same way about it. A short time ago my son was hospitalized with what is probably HCM – and it is being treated as such. Consequently I found myself feeling guilty about it. That is until I realized that he is still happy to be alive, and we would all be so much poorer if he were never born.

                I do not know the correct path you should take, but do not use the possibility of your child inheriting HCM as an excuse for your decision. Your child would be glad to be alive whichever way that 50 / 50 chance worked out, and would in all probability live out a full lifespan.
                Burt

                Comment


                • #9
                  April

                  Being a mother and having a son with the disease....at first i did feel guilty about him getting it, he has brought more joy to my life i couldn't imagine life without him and no i'm not sorry for bringing him into my life, he is married and has 2 sons 10 and 4, i hate seeing him go through what he has already but i'm glad they caught his before it got too bad not like mine i was advanced they say when it was found i was treated for asthma for years, but again i don't have any regrets for bringing my son into the world he is now 28 and hopefully will be here as an old man



                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                  Comment


                  • #10
                    Hello everyone,this is something I have been thinking a lot about .I found out I have hcm back in mid april. at the time my wife was 3 mos pregnant.we have since had a beautiful baby girl.I also have a nine year old son that has a heart murmur.He was brought in to a pediatric cardiologist at st francis hospital on long island.they did an echo and said other than the murmur he is ok for now,and we need to monitor him once a year.I bring my son to little league basketball and watch him run up and down the court and sometimes I get nervous .I find myself telling him to take it easy,and trying to discourage him from getting short of breath.I have read some of the postings of members who have lost children to this disease and to be honest I dont know where you get your strength.I couldnt imagen life without him.all that being said I dont know how to feel. I had always wanted a large family but this makes me question my motives are they mostly selfish.Im still undecided about more children I love kids but dont want my children to hurt or worse.I have never faced this type of dilemma before ,but gratefully it is something I can stay undecided about for now and wait for God to point me in the right direction. besides Im more than certain my wife would tell me to do my best back to school triple lindy(rodney dangerfield)and get lost. mike ob
                    One day at a time.

                    Comment


                    • #11
                      Ask a specialist

                      Hi April.
                      I am pregnant right now and have pondered the should I question alot over the last year before we started trying. I had my 2 1/2 year old son with no problems. I had a perfect easy pregnacy and because I had no idea I had HCM I took no precautions at all. Last winter I went to a new family doctor who observed that my "heart murmor" (which I had always had and been told not to worry about) did not sound normal. He orded an echo and I was diagnosed with HCM. I have wondered did my pregnancy make it worse. Few people ever heard anything before that. I have pondered that. My conclusion is I would have had my son even if I had known ahead of time it could make things worse. My next decision was whether or not to try again, what would it do to my heart, will the baby have HCM.. alot of the things you are wondering now. I talked with my HCM specialist (if you dont have one get one ASAP it is great to have a Dr who knows this condition inside and out). He said that I should be able to handle another pregnancy just fine. I also thought alot about passing this on. I have prayed and prayed that my children DONT get this, but if they do we will cross that bridge when we get there. My mom had three kids without HCM and one with it. While I am thrilled to be the lucky recipient of this gene, I am glad she had me. As medical technology advances who knows 18 or 20 years from now they may have great things they can do to help HCMers, they may not. Bottom line is my decision was its well woth the risk.
                      What is right for me may not be right for you, I know this is a hard decision for you. Talk with a specialist and find out about your individual risks first. Then go from there. If there is ever anything I can do do to help feel free to send me a personal message and ask whatever.
                      2.6 Septal Measurement
                      ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                      "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                      ~Steel Magnolia's~

                      Comment


                      • #12
                        Hi April

                        About getting pregnant, the thing that concerns me is that you had an Alcohol Ablation done and you go in and out of congestive heart failure. That is serious.

                        Having a baby is very hard on a heart that is already in some degree of failure. There is a lot to consider.

                        From what I understand, most women who have congestive heart failure do not get pregnant. In fact most doctors advise against it.


                        I am sorry to say this, and I do not mean to be insensitive, but there is much cause for concern.

                        I wish you well.

                        Eileen
                        49 yrs. old
                        Diagnosed at 31.
                        Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                        First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                        Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                        Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                        My brother passed away suddenly at 34 yrs old from HCM.
                        2 teenage children, ages 17 and 15.

                        Comment


                        • #13
                          Its interesting how many different opinions one can get, especially with such a complicated disease as is HCM.
                          There is one more thing I would like to toss in, as if you don't have enough to consider. How will you feel afterwards for the next oh....18 yrs.
                          I felt great through most of my pregnancy(5 yrs ago), I had very few HCM symptoms and was carefully followed by a high risk OB/GYN as well as my cardiologist. Delivery was uneventful and I remained in pretty good shape for a few yrs.

                          My symptoms began to worsen when my son was 3, now I am to the point where every day is a struggle and I somedays can barely dress myself let alone chase a very energetic 4.5 yr old. (My husband and 12 yr old are a tremendous help). The emotional stress is taking its toll on me as well.
                          Of course no matter how bad things get I will NEVER regret having my kids, in fact I wish I were able to have more. My kids are why I get up everyday.

                          Your situation seems much more serious then mine was, so a good heart to heart with your cardiologist(prefferably a specialist) should be high on your list. I am sure you will get plenty of advice, please take your time and make sure you have considered everything.

                          Take care,

                          Pam
                          It's not what you gather, but what you scatter that tells what kind of life you have lived.

                          Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                          Comment

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