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  • Pregnancy and HCM--any advice please

    [Pregnancy and HCM--any advice please]

    Author: Angela (---.hgsi.com)

    Date: 05-15-02 14:38

    Hi,

    I am so glad that I found this board. I am 31 years old and 31 weeks pregnant with my first child. I was diagnosed with HCM 6 years ago and have been taking toprol XL (50 mg daily) since then. I have had my blood drawn and sent to Drs. Seidman (Johnathan and Cristine) at Brigham and Women's Hospt. in Boston--they have collaborated with my cardiologist (Dr. Thomas Traill, Johns Hopkins) in order to be screened for any of the identified mutations, but so far nothing. We are pretty sure that it is genetic as my mother has it and we suspect that her father also had it. Before getting pregnant, I tried to find other women who have gone through a pregnancy and delivery with HCM, but with no luck. I had genetic counseling and am seeing a perinatalogist, pediatric cardio. and my own cardio. in addition to my OB/gyn. My mother also has the disease, but she was 21 when she had me, 25 when she had my sister and she wasn't diagnosed until she was 45, so she couldn't really give me any advice. The baby's heart looks wonderful, but as we all know, it might not show up for many years down the road. So far, I feel so lucky as I have been doing very well with the pregnancy but I am so terrified about the labor and delivery and what will happen with my heart. I have so many questions and concerns that my doctors can't seem to answer for me. I get the standard "well, it puts you at greater risk for sudden death" response and that scares the crap out of me. If there is anyone who can share their experience with me at all, I would so greatly appreciate it.

    Thank you,

    Angela

    [email protected]

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Shannon Santagate (---.galileo.com)

    Date: 05-15-02 18:16

    Hi Angela,

    Have known about my HCM since early childhood. My father and sister died from it, one of my brothers is doing very well now after an alcohol ablation and a myectomy, and my other brother lucked out and doesn't have HCM at all. I am now 34. I had a baby 3 and a half years ago with no complications whatsoever. While I was pregnant I felt better than I ever have (well, aside from morning sickness that lasted all day!) My cardiologist decided that it would be better for me to have a c-section due to the HCM. She didn't think I should go through labor. The only regret I have is that the anesthesiologist for my c-section decided at the last minute to give me general anesthesia (which put me all the way out) instead of just the spinal block. He felt that the gereral was safer for my heart. I have since learned that this was not necessarily so. Anyway, everything went perfectly fine and I now have a wonderful 3 and a half year old little boy. (He has a big head that I'm glad I didn't have to deliver naturally!! )

    My advise is for you (or better yet, your OB) to consult an HCM specialist to find out the best way for you to deliver. And try not to worry! Just try to enjoy the rest of your pregnancy and follow all of your doctors' advise. If you want to talk more you are welcome to e-mail me directly at [email protected].

    Good luck and congratulations!

    Shannon

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Julie (216.181.113.---)

    Date: 05-16-02 08:12

    Hi Angela,

    Did you have to change your medication when you became pregnant? I asked my doctor about pregancy and he said that I would have to get off my beta-blocker (propranolol), but didn't elaborate on the matter.

    I've been looking at studies about pregnancy and HCM and all the most recent ones seem positve.

    Here's an abstract that I found on either medline or medpub:

    Hypertrophic cardiomyopathy (HCM) is a rare, often familial condition, which may be complicated by syncope, atrial or ventricular arrhythmias and episodes of cardiac failure. This genetic disease affects young people and may be observed in women wishing for a pregnancy. The duration and outcome of such pregnancies has not been extensively studied. The authors undertook a retrospective study by questionnaire to compare the pregnancies of 41 women with HCM, a total of 150 pregnancies, with those of 39 unaffected women from the same families: a total of 132 pregnancies. None of the women died, there were no hospital admission for cardiac causes and there was no aggravation of functional status (31% of women with HCM had symptoms before pregnancy compared with 27% during pregnancy). The foetal prognosis was good with no increase in prematurity or neonatal crises. Only the women with symptoms before pregnancy had an increased risk of foetal prematurity compared with healthy women (18% versus 5%). These results indicate the good tolerance of pregnancy of women with HCM and should lead to a revision of systematic medical contra-indication of pregnancy in these patients.

    authors: Probst V, Langlard JM, Desnos M, Komajda M, Bouhour JB.

    Journal: Service de cardiologie, CHU de Nantes, hopital G. & R. Laennec, bd Jacques Monod, 44093 Saint-Herblain.

    PMID: 11933543 [PubMed - indexed for MEDLINE]

    Best of luck!!!!

    Julie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: s. beckley -moderator (---.dsl.mindspring.com)

    Date: 05-16-02 10:25

    Hi,

    Dr. Marla Mendelson at Northwestern Memorial in Chicago is a cardiologist who has treated a lot of women who had babies while they were on a beta-blocker or even on Norpace (disopyramide). You shouldn't necessarily need to stop taking your heart medication.

    My mom had 4 kids on HCM and only 2 of us have it. We are aok for the most part. I think the c-section isn't a bad idea, though. Something to think about.

    It sounds like you have all your bases covered. Try to enjoy the pregnancy.

    best wishes,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Erin (12.10.17.---)

    Date: 05-16-02 16:20

    Hi,

    It is so wonderful to hear about someone else that can relate to the whole pregnancy question. I am 26 yrs old and have been diagnosed with HCM since I was 14. I have a pacemaker/defibrilator and have undergone a myectomy 10 yrs ago. The pregnancy question has been floating around in my head recently and it is reassuring that other people have gone through it. I would love to have a child some day, but I don't know if I have enough energy to do it. Would the drugs that I'm on would affect the child and could I prescreen the child to find out if they have it (and the severity). Help, where do I start? I'm worried that it is selfish to wantto have a child knowing that I could pass on a potentially fatal disease. Luckily I didn't have symptoms until teens, but I hear that this isn't always the case and the baby could die very young or even be stillbirth. Any advise? Are my worries in vain?

    Erin

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: s. beckley -moderator (---.dsl.mindspring.com)

    Date: 05-17-02 04:01

    Dear Erin

    Your concerns are valid, but not necessarily insurmountable --it really depends on your overall health and the risks to you as well as any medication issues while pregnant.

    Certain drugs are not recommended for a pregnant woman, especially coumadin. Your child would have a 50/50 chance of having HCM. As for pre-screening, I don't think this is available yet. Since you know ahead of time what the possibilities are, you would have your child get an echo every year to see how it goes.

    I think your best bet is to find an ob/gyn who handles a lot of high risk patients and an HCM specialist. That way your particular situation can be evaluated properly. Everyone is different and what works for some doesn't for others. You really need personal advice on your specifics to make an informed decision here.

    If you need referrals, please call the office at 973-983-7429.

    take care,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Angela (---.nrockv01.md.comcast.net)

    Date: 05-17-02 07:44

    Wow, thanks so much for the info! Julie and Erin--I did not have to stop taking the Toprol XL. In fact, my perinatalogist and cardiologist strongly urged me NOT to stop taking it. They said that the amount that passes through the placenta is minimal and that babies tend to do very well with this. Plus, it is protection for myself. One option for me, if I was uncomfortable with the toprol, was to switch to propanolol--that is supposed to be one of the most widely studied beta-blockers. It is one of the first that came out and has been used widely during pregnancy. Toprol is a little newer, so that is why there some questions as to whether or not it would be ok. But, on the whole, I have been told that beta-blockers are perfectly fine to take during pregnancy. The perinatalogist conducts ultrasounds on the baby every 4 weeks to monitor growth because, in the past,there was some evidence of low birth weight babies with beta-blockers, but, at 31 weeks, she is right on target for weight and a little over for height! There is no way to pre-screen for the disease at the moment. We sought genetic counseling but basically they told us what we already knew--50-50 chance. We had a very thorough sonogram at 18 weeks that mainly focused on the heart--it was a mini-fetal echo, if you will. That was just to make sure that there were 4 chambers and aortic arch, etc. Then, we had a fetal echo at 24 weeks. As you all know, this condition typically arises during the teen years, but can be detected as early as age 3 via EKG. So, it is highly unlikely that they would be able to detect HCM in a fetus. I think the reason they wanted the fetal echo was more to make sure that the heart had developed properly in terms of having the 4 chambers and all of the other components, and to make sure that there was not another type of congential defect that could be detected. We were told that we should have our baby seen at 2 weeks of age by the pediatric cardiologist in order for her to do a mini echo just to make sure that the ductus closed and that everything else with the heart seemed fine. But then, we would not have to have echos on her for several years.

    I am so glad to hear that S. Beckly's mother was able to have 4 children while having the disease! It gives me hope--I have always wanted a larger family! I just feel so lucky to be able to have this one though! I am so glad that there are other women out there who can provide advice!

    Thanks!

    Angela

    ([email protected])

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Jennifer (---.s547.tnt1.abrd.md.dialup.rcn.com)

    Date: 05-17-02 20:36

    Hi everyone.+

    +

    I think I might be able to add my few cents. I was diagnosed at 23 with HCM (31 now)and have had very few problems. Just the usual symptoms and one episode of a-fib which I converted out of within 12 hours. I too debated whether to have children. When I had the first doctor give me a go ahead, we went with it. So I guess I knew all along what I really wanted. I had Jacob a little over 2 years ago. My pregnancy was wonderful!!! I loved every minute of it. I saw periontologist for the entire preg. During delivery I was induced, then given a wonderful epidural. I felt nothing. He was allowed to descend as far as he could then they used forceps. I was told not to push and they did all the work. They gave me lots of fluids to counteract the epidural effecting my blood pressure. There was never a scary moment. I was on verapamil at the time and they did lots of level 2 ultrasounds to check him out. I was even able to breastfeed while on verapamil. +

    We are expecting our 2nd baby in Dec. I am 11 weeks now and soon will see the specialists. I expect everything to go the same. I guess I should say that I hope it will!+

    Yes, it is tiring having a child and I do find myself limited in doing certain things but....the good outweighs everything. It was the choice for us and we are so blessed with him. Any questions, please feel free to email. [email protected] take care, Jennifer

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Jacki (---.kvalley.com)

    Date: 05-20-02 03:46

    Hi,

    My husband and I just started trying to have a baby. With any luckk I will soon know if I am pregnant. I have been having so many worries, because as I have already stated earlier in a previous post, I could still end up having HCM, even tho I have been tested negative twice. I just wanted to say it is so nice to know others have gone through this, and know how they are doing, and how babies that are conceived with a chance of HCM are doing. Thanks so much!

    Jacki

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Pregnancy and HCM--any advice please]

    Author: Arlene (164.119.245.---)

    Date: 05-28-02 09:48

    Ladies,

    It is wonderful to hear all of you talk about this. My husband and I have been stuggling with this choice for 3 years now. I was diagnosed as an early teen and am now 25. My cardiologist told my husband and I "no children" in March. We have since looked for different doctors and have found a cardiologist that deals with preg women that have heart diseases and arrithmias (which I have). My husband and I will begin trying to have a child soon. I am on Toprol XL also and the doctor has suggested that I go off of it the first trimester. I am going to give it a try.

    Arlene
    NOTE: This is a post from the previous forum message board.

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