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HCM and Pregancy?

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Equestriansrock I am 25, married, and planning for the future. My family has a strong history of HCM and I just received my genetic testing results. Diagnosed at about 13 and had an ICD implanted 11/2013. We are looking into all of our available options to ensure future generations do not have to suffer from this disease. Find out more about Equestriansrock
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  • HCM and Pregancy?

    My husband and I are starting to plan our future to include a child and I was wondering what types of issues I may have to consider during pregnancy. I am 25 y/o and have an ICD. We are also looking into PGD with IVF as I have received a positive genetic test result. I have been told that I will be considered high risk, but am not sure what I should be expecting. I was hoping for some insight from other HCM positive women who have gone through the process already. In my family, my father was the carrier and my only aunt is without symptoms(we are awaiting the rest of the families genetic test results). When my grandmother had her children, they did not know much about HCM so no recommendations were in place. I know each case is different but was hoping to try to get more information from first hand experiences. Some questions include how often will I have to go in for check-ups, when might they request for my to stop work (I stand all day), will I be able to collect short term disability while I am out, when is it recommended to turn off my ICD, will a C-section be my best(only?) option? I am also looking into finding specialists in my area who can monitor the whole process as well.

  • #2
    Re: HCM and Pregancy?

    When I had my son, I did not yet have my ICD, so I can't tell you what happened with that part of it. I can tell you that when I have had a few surgeries since having a device, they disabled my device with a magnet so they could cauterize the bleeding, and then when they remove the magnet, the device works as normal.

    I was monitored during my pregnancy by a high risk pregnancy doctor, a regular OB and my cardiologist. If you take meds, that is something you should discuss up front and ahead of time with your docs. There may be some meds that are safer for the baby than others.

    Another thing to discuss is your delivery. I had a vaginal birth, but you have to be careful about the anesthesia. I had an epidural although I had been cautioned in advance, and it turned out to be a little scary for a bit, so my best advice to you is to discuss ahead of time with an HCM specialist who is aware of the issues that can arise with HCM. Volume changes, such as occur in pregnancy and delivery can have a big effect on HCM, so best to be prepared ahead of time.

    I believe that standing at work will be something that your docs will determine. Disability as well. I think 6 weeks is standard for vaginal delivery, and more for C section. People who are high risk do see doctors more during pregnancy, but you should do fine as well as you are properly watched.

    My baby is going to middle school now. Enjoy the ride. BTW, I am a horse girl too, though I haven't ridden so much in the years since my son was born. I used to ride Saddlebreds.
    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.

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    • #3
      Re: HCM and Pregancy?

      I'm sure others with chime in. I would think that if your asymptomatic, the pregnancy should be no different other than you need to be a bit more aware of your condition (hydration, HR, stress, etc.). I don't know that they will even shut off the ICD (pending settings and your ultimate delivery method).
      I can say that many HCM'r have uncomplicated pregnancies and wish you the best during yours and the birth. I'd discuss your questions with your HCM doctor. Your smart to prepare and get info now.
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

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      • #4
        Re: HCM and Pregancy?

        Thank you for the input, I have read that beta blockers can be harmful to the baby and have been known to cause death in the womb. This will definitely be a huge issue for me especially where the whole process is going to be so expensive. I met a lady at my work who did PGD with IVF for a different medical condition and her out of pocket was $10,000 and sadly the first baby did not come to term. It cost her $20,000 to have her child. You never want to miscarry however this will most likely be a one shot deal for us, and I want to get it right. I am hoping to find a wonderful high risk obgyn in my area who can manage this.

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        • #5
          Re: HCM and Pregancy?

          Mbcube, I do present with symptoms, mainly shortness of breath and palpitations. They finally switched my medication and it seems to control those better. However I will probably have to come off of the meds during pregnacy. I was informed by the rep from Boston scientific that the device will most likely be turned off at some point. He did say that any shocks I receive should not hurt the baby, however, if I pass out and fall from the shock, there is a chance of injury. It will be interesting to see the battle that ensues there between cardio and obgyn. The flip side to that argument would be if I needed the shock in the first place I was experiencing a potentially deadly arithmea and may have passes out regardless. Good news is I have no history of blacking out. There are just so many different factors that come into play it is a little overwhelming.

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          • #6
            Re: HCM and Pregancy?

            I did quite a lot of research on beta blockers in pregnancy and found that while they sometimes cause IUGR (interuterine growth retardation), usually the baby once delivered catches up with his peers. I also know that in pregnancy they try to use the drugs with the longest track record. They were going to put me on propanolol but I wound up going without drugs for my pregnancy since I had not ever been on them before they waited to start me until after the pregnancy as my symptoms didn't really pick up until aterward.
            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: HCM and Pregancy?

              I just found this website and am so happy I did. I grateful for this thread!
              Before I was diagnosed this summer we were trying for a baby, now we are not. I still want to, but not until we have a full understanding of my severity. Its nice to know that others have done it and plan to.

              Best Wishes!

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              • #8
                Re: HCM and Pregancy?

                I thought I would share my pregnancy story on this thread. I know talking to others and hearing their stories (both good and bad) was helpful to me when my husband and I were planning to conceive.

                I should mention from the beginning that I live near Toronto Canada. So our healthcare system is obviously a little different. I am followed through the HCM Clinic at Toronto General Hospital.

                I was diagnosed with HCM in 2004 after my father passed away suddenly in 2003. I had an ICD implanted in 2005. It was a preventative step as I had never had symptoms, and all my tests (holter, ECG, echos) did not indicate that I experienced any arrhythmia. I had genetic testing in 2006 and a gene was identified. My trips to the defib clinic were always positive. I'm not obstructed and I had no need to be on meds.

                When my husband and I decided to have a family, it was a long debate. We both knew the risks of me passing the condition on to a child. But IVF was just not an option, financially, that we could afford. And it's not foolproof. There is still a small chance an embryo could end up having the gene. And then we realized - we could spend all time and money trying to prevent a child from having HCM but at the same time, this same child could end up having other conditions that we couldn't predict and would be totally unforeseen. At least with HCM, we knew what we were getting into. So we decided to let nature take its course and hope the 50/50 odds were in our favour.

                I saw my cardiologists before conceiving. After getting pregnant, I was referred to a special OB and and obstetric cardiologist at Mt Sinai Hospital in Toronto. They worked with my team at Toronto General. I didn't need meds. There was never any discussion of turning my defib off. I was told that if I were shocked, there was no harm to baby.

                Initially, I had a totally normal pregnancy. At 20 weeks, I noticed that my heart rate was higher than normal. But that happens normally in pregnancy with increased blood volume.

                I did not have issues until 34 weeks. At 34 weeks, I almost passed out while emptying my dishwasher. A few days later, I completely passed out while in the shower. Initially, it was thought that I was having some pregnancy-induced hypotension but I was sent to the defib clinic asap to have my device checked just in case.

                The defib relayed a different message. Both events were life-threatening arrhythmia. The first event, the pacemaker on my defib was able to rescue the rhythm. The second event, when I had completely passed out, the defib had actually fired. I had no idea because I was unconscious at the time. It saved my life - and my baby's.

                I spent the next few weeks in hospital on telemetry for monitoring and to find a dose of sotalol that would prevent any future events and allow my baby to grow to term. I have since been told that sotalol is one of the safest drugs to take while pregnant (it's even given to Moms whose babies need drugs in utero). While in hospital, it was also identified than my calcium, magnesium and phosphorus levels were very very low (despite taking vitamins throughout my pregnancy). I was told the heart can be sensitive to electrolyte imbalances and this may have been what caused my issues - though they really could not be sure.

                My water broke at 37 weeks and pregnancy needed to be induced. I was told vaginal delivery was preferred to c-section if possible because the c-section put stress on the heart that a vaginal delivery did not. I was very concerned about the risks of having the epidural, both from my own research and talking to others via this message board. But after a long discussion with the anesthesia team, I felt confident all would be fine. They would put an arterial line in my wrist to monitor my blood pressure closely and they would do a VERY slow infusion. I was given the epidural first and then induced - I wasn't allowed to labour without anesthesia at all.

                Labour and delivery went SO smoothly. My son was born 4 months ago, happy and healthy!! I have since switched from Sotalol to Metoprolol so that I can breastfeed. While sotalol is safe in pregnancy, it accumulates in breastmilk at levels that are not safe for neonates.

                I am feeling well (other than the crappy beta-blocker side effects). Things have otherwise gone back to normal with my heart.

                We have not yet done genetic testing on my son. We had the option of testing cord blood. But the lead-up to his arrival was so stressful and emotional. Doing the cord blood testing and potentially learning that he was HCM positive was more than my husband and I could handle all at one time. We decided to wait - and just rejoice in the moment.

                My advice to those planning to have a baby. Don't turn your defib off! Make sure you have a long discussion with the anesthesia team about epidurals and your needs as a patient with HCM. And make sure you research the meds you're taking - for both during pregnancy and breastfeeding (if you plan to breastfeed) because not all pregnancy-safe drugs are safe for breastfeeding.

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                • #9
                  Re: HCM and Pregancy?

                  I told my doctors when first diagnosed that I did want another child, I only have one who was born before I was diagnosed. The doctors told me that getting pregnant with hcm and uncontrolled high blood pressure would be a death sentence to me and/or the baby. Very traumatic news at the time but I have came to understand they were just being safe and thinking of me. I would just make sure you know all the risks and possible problems that could arise during the pregnancy and labor and discuss them all with all doctors first. Good luck and I hope things go well with you and this journey. I wish you the best.

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                  • #10
                    Re: HCM and Pregancy?

                    Biokemkid - Thank you for sharing your experience. Yes, electrolyte imbalance is a key factor to watch for in us HCM'rs. Glad you & yours are doing great!
                    Marc
                    Diagnosed @ 48
                    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                    AICD - Valentines Day '08, Spark Plug replaced 11/14
                    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                    Quietly going insane . . .

                    Comment


                    • #11
                      Re: HCM and Pregancy?

                      hi. I see that this thread is a year old but I joined this forum hoping to meet other mums with HCM. I have a 20 month healthy toddler who was carried by a gestational surrogate. I have HCM. I was diagnosed in 2001. I have symptoms on exertion. I'm on Metoprolol only. I have an ICD and I'm paced. I was advised not to carry a pregnancy as when pregnant your blood volume doubles and my heart already struggles to effectively pump my current volume. I was told by the high risk obstetrician that I would likely have heart failure if I got pregnant.

                      Comment


                      • #12
                        Re: HCM and Pregancy?

                        My sister in law has been through two pregnancies with HOCM. Her first pregnancy was uneventul and she had a normal delivery. Her second pregnancy was also fairly uneventful except for SOB that she hadn't previously experienced. She stopped working and started taking BISOPROLOL to control her symptoms. She had a vacuum delivery because her cardiologist didn't want her to strain her heart by pushing. She went off the beta blocker after delivery since she is breastfeeding and it isn't considered safe for infants.

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