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Pregnancy and HCM

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  • Pregnancy and HCM

    I am 29 years old and was diagnosed with HCM recently. I get a little dizzy occasionally but have been otherwise lucky and I have no other symptoms. I have always known I had a "heart murmor" but was never very concerned about it. I finally gave in and had an echo done just to show everyone I was fine. Guess the surprise was on me. My husband and I have a wonderful healthy 2yo boy and would like to have another child. My Cardiologist called me 4 days ago and informed me that things looked worse than he anticipated from reading my family doctors report. After he finally reviewed my echo himself he realizes that I do actually have HCM and it is worse than the origional report. (He told me at my office visit that because my first pregnancy was so easy, and my blood pressure so good that he doubted the family doctors report, it probably wasnt that bad).
    He went on to tell me that I couldnt have anymore children, I should adopt, and that I would be better off to let my son grow up with 2 parents than to try to give him a sibling. I was stunned. I would love to hear from anyone with HCM who is or has been pregnant. How did your pregnancy go? What extra precautions should I take?
    May God bless you all!
    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~

  • #2
    Re: Pregnancy and HCMA

    That is hogwash!

    You should call and speak with Lisa, the President of the HCMA regarding this issue. I promise you she will have alot to say in response to what your doctor told you.

    I am the mom of a 2 1/2 year old son. Lisa has a 6 or 7 year old daughter (sorry, I don't remember Becca's age exactly). There are COUNTLESS OTHER women who have had children and who have HCM. It is a little more complicated that a pregnancy by a "regular" person, but not impossible by any standard.

    The recent studies have shown that there is no increased risk of adverse consequences in moms who have HCM. You just need to be aware of various issues, like it might be inadvisable to have an epidural at delivery, and you should be followed by both a perinatologist (high risk pg dr.) and a cardiologist during your pg. It is also best to plan in advance with dr.'s help, although it seems like you need better doctors!

    Please call Lisa. She will help you on to the right road. Also, search pregnancy on this board in the archives. You will find alot of info. there.

    Good luck, and don't let people who don't know what they are talking about discourage you.
    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
      Re: Pregnancy and HCMA

      Yes call Lisa asap to get all the accurate info on this question. For some of us who were not diagnosed in those years of childbearing it still went well. My pregnancies were difficult ,I was 26, 27 & 33 . The 3rd was a c-section because we were both having difficulties. Thankfully the outcomes were good . Having a history of passing out without explanation and issues with misdiagnosed chest pain and shortness of breath back then as well, things could have gone poorly. I am lucky considering . I see that precautions could have helped me as well as the right care so please get the right care for an at risk pregnancy. Best wishes to you. Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

      Comment


      • #4
        Re: Pregnancy and HCMA

        Gayle, I suggest you fire that doctor and see someone else. My husband's aunt has HCM and had 7 children, all of who are 30 or over now. You can certainly have more children if you want to and you're in relatively good health.

        On another topic, where in SC are you? I'm from Sumter.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Pregnancy and HCMA

          You need to be seeing an HCM specialist and if/when you get pregnant, you need to go to a high risk ob/gyn to make sure all your bases are covered.

          It may be that having your first child made your HCM worse--it is possible. However, don't take your doctor's words at face value; get to an HCM specialist and have a proper assessment done.

          My mom and my aunt had four and one kid(s) respectively and their health did get worse after each child, so you need to take that into account--and the fact that each of your children will have a 50/50 shot at having HCM.

          But if you want another child, no matter what, then you can probably pull it off with the right care.

          good luck,

          Sarah

          Comment


          • #6
            Re: Pregnancy and HCMA

            Thank you all so much. I am going to call Lisa today and I am definately going to look for a Dr. who knows more about HCM than mine.

            Reenie I am from Columbia, nice to meet someone else from SC.
            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


            • #7
              Re: Pregnancy and HCMA

              I have just left a message on your answering machine, call me back when you can.

              FYI MOST women with HCM do fine with pregnancy - however there are some who do not and each situation must be evaluated individually by a doctor with experience in the condition.

              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


              • #8
                Re: Pregnancy and HCMA

                Gayle,
                It’s quite interesting to hear you’re from Colombia and now live in South Carolina. I could perceive no accent at all. Have an easy pregnancy and a beautiful child.
                Burt

                Comment


                • #9
                  Re: Pregnancy and HCMA

                  HI I CAN TELL YOU TIS , YOUR DOCTOR IS RIGHT, AND IS ALL SAD I ADMIT, BUT WHAT I HAVE EXPREICANCED WITH MY 2 CHILDREN, I WOULD NEVER PUT A CHILD THROUGH THIS AGAIN. ANYWAYS MY FIRST SON BORN WITH WHAT THEY CALL MILD HOCM, PASSED AWAY UNEXPECTEDLY AT AGE 11 . MY 2ND SON WHO IS NOW 19 HAD A MYECTOMY AT 15 AND WAS DUE FOR A 2ND AT 17 B UT HE REFUSED, HE NOW HAS VERY LITTLE TIME OR EVEN NO TIME IF HE DONT HAVE ANOTEHR MYECTOMY. WE ARE GOING TO TORONTO CHILDRENS HOSPAITAL TOMORROW TO HAVE TEST DONE PRE SURGERY TESTING, I CANT BELIVE HE IS EVEN GOING. HE HAD SUREGRY ONCE AND HE SAID NEVER AGAIN. BUT WE WILL SEE WHAT H APPENS TOMORROW, OK ANOTHER ONE FOR YOU, I HAD A 3RDPREGANACY AND HE IS MY YOUNGEST, HE IS 18 AND HE HAS NO HOCM SO THEY SAY I TEND NOT TO TRUST IT BECAUSE ITS A STRONG GENE THAT CARRIES ON IN FAMILYS. ANYWAYS HE WILL BE CHECKED TOMRROW AS WELL FOR MY 2ND OPPINION. AND FOR THE 4TH PREG I HAD TO ABORT THE DOC SAID ME OR THE CHILD WILL DIE AND OR I AM BRINGING MORE CHILDREN IN THE WORLD TO SUFFER, HE WAS DAMN RIGHT. ITS A HORRIBLE DISEASE I HATE IT EVERY DAY AND WOULD NEVER OF HAD CHILDREN IF I KNEW WHAT I KNOW NOW. TODAY CARDIOS KNOW M ORE, SO I BELIVE THEM FROM MY EXPREICANCE, MY FAMILY HAS ALL PASSED ON WITH HOCM, SO YOUNG TO. SCAREY... BUT I DEMAND CURE NOT CONTROL, A WONDER MEDICNIE IS SOMEWHERE OUT THERE. IM JUST WAITING FOR IT. IM YOUNG , TO YOUNG TO GO YET LOL.










                  recently. I get a little dizzy occasionally but have been otherwise lucky and I have no other symptoms. I have always known I had a "heart murmor" but was never very concerned about it. I finally gave in and had an echo done just to show everyone I was fine. Guess the surprise was on me. My husband and I have a wonderful healthy 2yo boy and would like to have another child. My Cardiologist called me 4 days ago and informed me that things looked worse than he anticipated from reading my family doctors report. After he finally reviewed my echo himself he realizes that I do actually have HCMA and it is worse than the origional report. (He told me at my office visit that because my first pregnancy was so easy, and my blood pressure so good that he doubted the family doctors report, it probably wasnt that bad).
                  He went on to tell me that I couldnt have anymore children, I should adopt, and that I would be better off to let my son grow up with 2 parents than to try to give him a sibling. I was stunned. I would love to hear from anyone with HCMA who is or has been pregnant. How did your pregnancy go? What extra precautions should I take?
                  May God bless you all![/quote]

                  Comment


                  • #10
                    Re: Pregnancy and HCMA

                    I AGREE WITH THE DOCTOR, EVEN THOUG IS COLD AS IT SOUNDS, BUT WHY HAVEBABIES THAT GET HOCM, ???? BEEN THERE DONE IT HATE IT. MY DOCTOR SAID SAIME THIMG TO ME, I TOOK HIS ADVICE, AND I HAVE 2 CHILDREN AND ONE THAT HAD PAASED AWAY AT 11 YRS OLD FROM HOCM. MY 2ND NEEDS ANOTHER HEART SURGERY ASAP WE ARE GOING TO TTORONTO TOMORROW FOR PRE OP TESTING. WILL BE HIS 2ND HE IS 19 HIS OTHER ONE WAS 15 INBETEEN HE REFUSED ANOTHER , THIS IS LONG OVER DUE. MY 3RD SON SO FAR SKIPPED IT, IT IS KNOWN TO SKIP, BUT I WILL STATE THAT WHEN CHILDREN ARE BORN WITH HOCM, ITS AN AWFULL EXPREICNACE FOR THEM, SCAREY TOO, IF YOU THINK WE ARE SCARED WHAT DO YOU THINK THEY ARE FOR THE REST OF THEIR LIVES? DOCTORS GIVE ADVICE LIKE LISA SAID INDIVIDUAL CASES, AND AS FOR MINE, HOCM IS STRONG IN MY FAMILY, SO YES TODAYS NEW TECHNOLOGY SAYS NOMRE CHILDREN BECAUSE THE CURE IS NOT IN THE FUTURE. I KN OW ALOT OF HOCM I HAVE STUDIED IT SINCE I WAS 4 YEARS OLD, ITS DREADFULL AND I WISH I HAD THE ADVICE NOT TO HAVE CHILDREN. I SEEN AND STILL SEE MY CHILDREN SUFFER AS I DO. I HATE IT. I FEEL HELPLESS.

                    Comment


                    • #11
                      Re: Pregnancy and HCMA

                      Flowerr,

                      I wanted to tell you that I'm sorry you and your whole family have had such a hard time with HCM. However, many people with HCM lead full happy lives. My children haven't tested positive for HCM yet, but I think at least one of the three of them will, given some symptoms she tells me about. That doesn't mean that I wish I hadn't had her. We didn't know about HCM when we had our children but I don't think I would have decided to not have any kids because of it.

                      It's hard to see your children have a disease that you can't get rid of. I don't know what kind of doctor's care you and your children have had, but it's safe to say that some doctors know more about HCM than others. Which doctor will your son see? Dr Wigle is a great HCM specialist. Many, if not most, doctors have little knowledge on how to handle HCM. I wish you the best for you and your son. You'll be in our thoughts.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Pregnancy and HCMA

                        I would just like to add to what Reenie said, so that someone new won't read this string and decide that they shouldn't have kids.

                        I knew that I had HCM in my family before I decided to get pregnant. I went for genetic counseling, and knew that there was a 50% chance than any of my offspring would have the disease. I also knew that the affected people in my family had had basically normal lives. My father, who has HCM, is 72, and although he has had challenges with his HCM, he has raised a family, held a job, and done the same things as anyone else. My life is also fulfilling. I now have an ICD, and I suffer from some HCM symptoms, but they don't keep me from raising my son, going to work, grocery shopping, exercising (in moderation, of course), etc.

                        HCM tends to present the same way in families. Therefore, the doctors told me that if my son is diagnosed with HCM, it is likely that the progression of the disease will follow a similar path to mine and my dad's. Meanwhile, science is advancing in leaps and bounds. By the time my son is my age, they may be able to replace his heart with a bionic one, or genetically repair his current one. Who knows what the future will bring? Meanwhile, if you don't have a child, you will never know what is like to be called mommy, will never know what it is like when your child starts walking and talking, graduates school, gets married, and becomes a parent themselves.

                        My point is this, make an educated decision, keeping in mind that certain risks might be worth taking.
                        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


                        • #13
                          Re: Pregnancy and HCMA

                          My first son was born before I knew I had HCM but you can bet we thought long and hard before having our second. My husband and I decided that we should have one more. HCM or not, I didn't want my son to grow up an only child. I pray that neither of them develope HCM but we will have to cross that bridge when we get there. My kids have lived normal lives and I have for the most part, until recently, but I don't know for sure if what I am going through now is even HCM related.
                          Having kids is a big decision without the threat of a serious illness, weigh the good and the bad and listen carefully to your Dr's as each situation is different.
                          I was never told I couldn't have kids. In fact my cardiologist told me 2 yrs ago that based on my history and my physical state at the time there was little reason for me NOT to have more if I chose to. naturally I would still be 'high risk'.
                          He however WAS concerned with my 'mental' state as I was extremely stressed at the time. I chose not to have any more. Good luck and hope you find all the answers you need.


                          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


                          • #14
                            Re: Pregnancy and HCMA

                            One question to consider here: Would I have wanted my parents to decide not to have me, if they had known that my mother (or father) had HCM?

                            Comment


                            • #15
                              Re: Pregnancy and HCMA

                              Flowerr, we aren't trying to beat up on you. We're just trying to point out to new people who come here and read this that many people can have normal lives, including having children. This is a very personal decision to make. If a doctor advises you to not have children, then you have to make the best decisions you can based on the knowledge you have. I just didn't want others to think that just because you have HCM you can't have kids. You just have to do what you have to do.

                              Reenie
                              Reenie

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

                              Comment

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