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  • Starting a family

    Hello everyone,

    MY sister, who is 33 now, and lives in India, is a hypertrophic cardiomyopathy patient since birth. She inherited this from her mother who died soon after giving birth to her.

    Recently she got married to a wonderful man and just announced to us that she is pregnant. We all are very worried about what this pregnancy might do to her health and dont want her to meet the same fate her mother had. We dont know what to do next.

    Any word of advice on how safe is it for her to have this child. Any papers or websites you guys know of that have spoken about this topic. Anyone on this board know of women with this condition who have had children? If yes, can you share their experiences and how they are doing?

    Any advice would be helpful?

    Chetan, really worried brother

  • #2
    Re: Starting a family

    Each case needs to be evaluated on its own. Most woman do well with pregnancy, however it is best to have her evaluated by an HCM specialist.

    Epidurals should be avoided during delivery.

    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


    • #3
      Re: Starting a family

      Hi Chetan and welcome to our site.

      You are a good brother to care about your sister and to seek out information. There is a lot in this question that you ask.

      I infer from your post that you do not have a risk of the HCM as it sounds that you may have had different mothers? If you share the same mother then you also need to be checked as well as all your siblings and their children.

      Safety during pregnancy and HCM has many angles to consider.
      Some of us have had multiple pregnancies with very few problems and many may have not known they had HCM at the time or the disease had not begun to express itself at the time of childbearing.

      When someone knows they have HCM and are pregnant it is important that they have appropriate care as with a high risk pregnancy doctor and someone affiliated with the individuals HCM specialist. These safeguards can help to insure that the pregnancy progress with minimal danger and that the delivery is prepared for regarding care of the HCM individual.

      As you have reported your sisters mother died after giving birth and again I infer it was related to her HCM? It does sound like there are a few things that need to be clarified and it is important that your sister have the best care available for herself and her unborn child. Please give us more info and know that we will try to answer all your questions.

      We are here to help. Others will respond also and a good call to make if you can is to LIsa Salberg at the Office for the HCMA. You will see the number at the bottom of each page you come upon here at the site.

      Best wishes and I am happy to help.
      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: Starting a family

        Hi Chetan

        I agree with Lisa. Your sister should be seeing a HCM specialist.

        I can only tell you about my experiences.

        I became pregnant with my daughter in 1970. I did have a heart murmur, but HCM was very rare. I had a normal birth with no harm to me or my daughter.

        After her birth, my husband and I wanted more children. I was told over and over again.......in time...in time.

        I was diagnosed with HCM (at that time known as IHSS) in 1973. I had a myectomy and was watched closely.

        In December 1978 I was so excited...I was PREGNANT!! My cardiologist wanted to me to have a abortion, but we said, "God blessed us with a another child, there is no way we are going to abort". The doctors, especially my cardiologist was very cautious. I was seeing two obstricians (one near where I lived, the other closer the hospital where I was going to give birth) and my cardiologist more often.

        I gave birth to my son, Michael, December 1978. There was no harm to me or my son until 1994 when he passed away from HCM.

        To make a much longer story short......Looking back I wouldn't change giving birth. Both our children meant the world to us, even now.

        Please take Lisa's advice and contact a specialist in HCM. I pray that your sister has a healthy child and that she contacts a specialist that can answer her questions and make all involved more comfortable. Believe me, if possible, it is worth it.
        Esther

        Comment


        • #5
          Re: Starting a family

          Hi Pam and all,

          Thank you for your replies. I am very scared and tensed.

          Let me first give some more facts about my sister.

          1. Pam, yes we have had two seperate mothers. So I am not at risk for this disease. Her mother died within one year of giving birth to her. I was told that it was because of this disease her mother's heart was not able to take the pressure of child birth.
          2. My sister's overall health has been good so far. She had some episodes of fainting when we were kids. But since then her life has been normal. She takes Inderal everyday (I think twice a day)
          3. I dont think we have a HCM specialist in India that we can go to. We did consult my family physician. He is the closest we have since he visits USA often and hence knows a lot about this disease.When we consulted him his opinion was that what will happen because of this cannot be predicted. She could have normal delivery or she could have the same fate as her mother. He also said that people with this condition have a short life span. So incase my sister decides to have this baby her life span will be further reduced. That is the most scary part.
          4. I currently live in San Jose,CA. Do you guys know of any HCA specialist around here?

          Let me know if you need more information

          Chetan

          Comment


          • #6
            Re: Starting a family

            I believe that there is an HCM specialist at Stanford named Dr. Paul Wang.

            See link below.

            http://www.stanfordhospital.com/find...2130,1026,1420
            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


            • #7
              Re: Starting a family

              WOW - that is the longest web address ever!

              Yes that is the HCM person at Stanford.

              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: Starting a family

                Hi Chetan, I also live in San Jose, Ca. I understand there is now a HCM specialist at Stanford. I'm sure Lisa can help you with his/her name or any other specialists in our area. I would be interested in knowing also. I went to a cardiologist at Stanford up until around 6 years ago, and because of insurance issues I had to change doctors. Although I did see one of the top cardiologists there (Dr. Richard Popp), and he was referred to me by my regular cardiologist, I am not sure if he was considered an HCM specialist or not. Back then, I think we were all lumped together with other cardiac patients/conditions. He was great though, and he was the one who told me that it doesn't mean I could not have children because of HCM. Up until then my cardiologists all advised me against it. (By then I was already 35 and divorced so it was too late--but that's another story! ) But he explained, as Pam did, how each HCMer is different and it depends on the individual, there are so many advances these days and so much can be done. I now see a cardiologist in San Jose (Good Samaritan Hospital) who actually studied with Dr. Popp. His name is Dr. William Ricks. I love him too, but I am not sure if he is actually an HCM specialist. Up until a month ago, when I discovered this website, I did not know there were specialists. I just assumed all cardiologists knew all about our condition. Boy was I wrong !! If you are interested in talking to my cardiologist I would be glad to give you his number, but like I said I do not know if he is considered a specialist. Perhaps Lisa will have some other contacts for us too. I would love to know of some others in our area too. Let me know if I can be of any further help. Hang in there, I know you're worried, but there is a lot of help and info out there, and you found the right place to come for it.
                JoAnn

                Comment


                • #9
                  Re: Starting a family

                  Thanks for the contact at Stanford.
                  Yes that is a long website!!

                  Comment


                  • #10
                    Re: Starting a family

                    Hello Chetan,
                    It sounds to me like you are not being advised by an HCM specialist – at least not yet.

                    You say your sister is 33 now, so her mom died some 32 years ago. Let me tell you that one heck of a lot of progress has occurred in that length of time. With proper care there is no reason why your sister can’t have a wonderful baby, and come through it herself with flying colors.

                    Please don’t say that HCM shortens your life. I’m now seventy two years old and that sort of talk frightens me, as I plan on being around for a long time yet.

                    If it is possible for your sister’s doctor in India to consult with your specialist at Sanford, through email or instant messaging, or even the phone, it would help a lot in her getting the proper care and medications.

                    I guess we will be calling you uncle before long.
                    Burt

                    Comment


                    • #11
                      Re: Starting a family

                      Since your sister's mother died of HCM complications and your siste has had fainting spells in the past she might be a candidate for a device called an ICD, or implanted cardiodefibrillator. This is designed to be implanted in the patient and to shock the heart if there are any threatening arrhythmias. Can you ask her about this?

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: Starting a family

                        Hi Burton,

                        Sorry, I did not mean to scare you in anyway. May god give you the longest life possible. The statement I made about HCM shortening her life span was a quote of what our family physician told us in India. That one statement alone has scared the day lights out of my parents and I.

                        I agree with you that medically we have advanced so much that it should be ok. What happened to her mother was 32 years ago. I am going to consult with that doc at Stanford to take his opinion.

                        I guess my family is trying to understand the possible impact of this pregnancy.Hence I asked all those questions.

                        Thanks all for your advice and patience.

                        Chetan

                        Comment


                        • #13
                          Re: Starting a family

                          Hi Chetan,
                          Hey brother, I wasn’t really frightened by your remarks. I was trying to show you that HCM does not necessarily mean a death sentence. The fact is that now-a-days almost everybody with HCM who gets appropriate care lives a full lifespan – and that includes having and raising children.

                          The trick here is to get the HCM specialist at Stanford to consult and support the doctors in India so that your sister has the best possible care. You see, HCM is a rare condition – on average only 1 in 500 have it, and many of them don’t even know they do have it. To a cardiologist this is a tiny corner of their profession, and they spend almost all there study time keeping current with the conditions they see and treat every day. Consequently many of them have old, out-dated, or incorrect understanding of the current advances in the care and treatment of HCM.

                          Fortunately there are a few cardiologists who are very interested in HCM, and specialize in its treatment. That’s why the support of the specialist in Stanford would be so helpful to the doctors in India who are treating your sister, and from the comments they made, are not really current on this malady.

                          So I guess it’s steadfast brother to the rescue. Good luck – and please keep us posted.
                          Burt

                          Comment


                          • #14
                            Re: Starting a family

                            Thanks Burt for the words of encouragement.

                            This group is wonderful. I am feeling so much better in just one day after joining this group.

                            Chetan

                            Comment


                            • #15
                              Re: Starting a family

                              You have already gotten a lot of great advice here. I just wanted to wish your sister the best with her pregnancy. If you have any questions at all, we'll be glad to help in any way we can.

                              Reenie
                              Reenie

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

                              Comment

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