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IHSS and Pregnancy


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  • IHSS and Pregnancy

    [IHSS and Pregnancy]

    Author: Arlene (164.119.245.---)

    Date: 03-13-02 09:16

    Hi, I have Hypertrophic Cardiomyopathy. I have know this for

    about 10 years. I spoke with my cardiologist about having a

    child about 3 years ago. He informed me of the fact that my

    child would have a 50/50 chance of having the disease and that I

    would need to have a c-section and would need to go through a

    certain ob in the area. I arranged it so that I could see the

    correct ob. My husband and I discussed the risks extensively

    over the last three years and had decided to go forward with the

    decision to try to have a child. Yesterday I visited my

    cardiologist again and informed him of this. We thought from

    previous discussions that we had his support. He now says that

    he would advise me NOT to have a child. However I know of two

    women with Hypertrophic Cardiomyopathy that have had several

    children. I was wondering if anyone had any information or first

    hand experience with a woman with Hypertrophic Cardiomyopathy

    having a child. Any information would help.


    [Re: IHSS and Pregnancy]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-13-02 14:39

    Dear Arlene,

    Here is my family history in a nutshell so you can get an idea about HCM and kids.

    My grandfather had HCM and he had six kids. Of those 6, 3 have HCM, all female. My aunt Pam also has other problems that prevent her from having kids, so she has never had one full term. My aunt Janet had one boy. She told me that it wrecked her health and she would probably have not gone full term if she had known what it would be like. Her son has it and of _his_ two kids, 1 has it (son) and the daughter hasn't been tested yet as she is only 3. Eric is not very good about taking care of himself, but he hasn't been hospitalized more than a couple times. Janet has been in and out of rhythm for the last few years, especially, more often.

    My mother had four kids. 2 of us have it (1 boy, 1 girl). My mother's health was seriously compromised and she was in and out of the hospital a lot during my childhood. She was told not to keep having kids, but she wanted 4 kids, so she ignored the doctors. There were times when she couldn't leave the house for weeks. She did all the Xmas shopping from catalogs b/c she couldn't go to the store. When she was 50, she required a hysterectomy and it was not handled quite right and she had a massive stroke three weeks later. She lost 70 IQ points and the use of her right side (she was right-handed). The problem was that she was going in and out of atrial fibrillation and they took her off the coumadin too long to do the procedure. My mom has been on Cordarone for ten years and she is now turning blue due to the build up in her body but she can't stop taking it.

    My brother is permanently in atrial fibrillation and believes he is going to die before he is 50. I had a TIA in 2000 but have recovered fully. I will be on Coumadin the rest of my life and therefore not able to have children even if I had wanted to ignore my doctor's advice, too. However, my brother would like to have a family some day (he isn't 30 yet).

    We all have a relatively mild form of HCM and none of us have implanted defibrillators. Most of us are non-obstructed.

    Dr. Marla Mendelson at Northwestern Memorial in Chicago is an expert in this area and when I saw her (before my stroke) she was not against my having kids. If you can, I recommend getting a second opinion from her since she has treated a lot of women with high-risk pregnancies (she is a cardiologist). If it would be safe for you to have kids, she would know.

    Everyone's HCM is different. You need to weigh your health now and your health later and how likely it would be that you would not be able to take care of your child sometimes. Even if you get the green light, you should be prepared to have extra help sometimes. I watch women on the bus with a baby, a stroller, her purse, the diaper bag, and shopping bags, and I can't imagine how I would be able to walk 10 feet under that load.

    I am not saying "don't have kids" but sometimes people only look at the pregnancy and not the long, long term. I wish you all the best and please call the HCMA office to see if they know of any HCM specialists in your area that you can see as well.

    best wishes,



    [Re: IHSS and Pregnancy]

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

    Date: 03-14-02 12:30

    Hi Arlene.

    I hate to disagree with Sarah because she knows a lot about HCM, but my experience is totally different!

    I was diagnosed with HCM at the age of 5 (there is a long family history of the disease.) I only started having symptoms about 10 years ago when I was 24. I got pregnant at the age of 30 and my cardiologist and gynecologist worked together to make sure everything was OK. I asked my Cardiologist if the pregnancy would affect the HCM. She said that I would probably feel better during the pregnancy because of the increast in blood flow. She explained why in more detail, but I have forgotten. She was right about my feeling better. She reduced my medications and I did have a c-section (they didn't want me to go through the strain of labor.) My son is now 3 and a half an has had one negative echo. He will be tested every few years. I pray that he has my husband's heart and not mine!

    Sarah is right when she says that everyone's HCM is different. I have had more problems that started late last year and am having an alcohol ablation next month in Houston by Dr. Spencer. I am considering trying for another baby later this year. My doctor told me to make sure with Dr. Spencer that a pregnancy is OK after the ablation.

    Your e-mail (and Sarah's) has really made me think......I wonder if I would have had a different opinion about my pregnancy from an HCM "expert." My local doctor is not an expert so I wonder if someone else may have warned against it.

    I wish you the best of luck with everything!



    [Re: IHSS and Pregnancy]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-15-02 03:35

    Dear Shannon

    I'm more than happy to be "disagreed" with. I just wanted to emphasize that everyone's situation is different, but Arlene did want first-hand accounts.

    Shannon, congrats to you and I hope baby #2 works out just as well.

    Best of luck to both of you,



    [Re: IHSS and Pregnancy]

    Author: Arlene (164.119.245.---)

    Date: 03-15-02 08:39


    Thank you both for your personal accounts of your or your families pregnancies. I really appreciate hearing them. It good to hear both sides. I am glad to hear most of all that no one is telling me that the women died do to pregnancy/delivery or their heart got so bad they needed a transplant. I got this from my father so I don't know much about HCM and pregnancy. My only sibling went to be with the Lord about 8 years ago after a transplant and then cancer. (She did not have a stable condition like I do) If I do decide to get pregnant, I am going in to it expecting some complications so I am prepared. I just want to be sure I know what I am dealing with. I am on beta blockers for the palapatations that I have at times but other then that I feel healthy. I know my limitations however. It bothered me when I found out that my doctor was now advising me not to do this. I believe he may have felt it was not a risk that needed to be taken. I also had an ob bring me to tears cause she felt I was so wrong in wanting to have a child and because I wanted to take the chance of bringing a child into the world that may also have this. I appreciate any other feed back anyone has concerning this topic. Thank you for helping in my decision by sharing your personal experiences.




    [Re: IHSS and Pregnancy]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-15-02 10:36

    Dear Arlene

    I think that is pretty rotten of a doctor to give you that lecture about bringing someone into the world with HCM. I hope that person is no longer your doctor!!

    Perhaps if you bought the HCMA book on living with cardiomyopathy and gave it to your dad, he would feel better. His comments are coming from a fear of losing you but he will need to come to terms with the fact that this is your choice and you are making decisions fully aware of their ramifications.

    Have you considered adoption? It is a difficult road in some ways as well, but it is something to think about.

    best of luck,



    [Re: IHSS and Pregnancy]

    Author: CH (---.nas48.philadelphia1.pa.us.da.qwest.ne)

    Date: 03-23-02 22:40


    We were in your shoes about 10 years ago. Back, then there was even less information on the topic. After years of debating and agognizing, we finally decided to adopt. We are so very glad we have our son. We love him as if he were our biological child. One of the biggest factors for us was to bringing a child into the world (50-50) chance who would have to go through what I did or worse. Sarah is right in that adopting a child has a lot of challenges also. We were lucky to get a newborn, who is relatively healthy. He is everything to us.

    Every situation is different though. Good luck with whatever you decide.



    [Re: IHSS and Pregnancy]

    Author: shannon (---.oshw.interhop.net)

    Date: 03-25-02 10:41


    I also have hypertrophic cardiomyopathy but I wasn't diagnosed until I was 6 weeks pregnant with my last baby. I had a transesophegial echo done at 10 weeks to check for any blockage-there was none thank god. My pregnancy was very hard on me and they have advised me not to have any more children. Most of my symptoms from my IHSS developed while I was pregnant, I had mild symptoms before but they really surfaced throughout the pregnancy and the've continued on. I was told they would go away when I had the baby but that didn't happen. One thing I guess I would suggest is to keep your weight gain to a minimum. I gained 70 pounds with all three of my pregnancies and maybe that was part of my problem. I've lost all my pregnancy weight now but maybe having gained so much weight it put too much strain on my heart. I'd like to add though that my growth on the septum of my heart did not increase so that is the good news. Good luck to you with everything and take good care of yourself.

    Hope I helped,



    [Re: IHSS and Pregnancy]

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

    Date: 03-29-02 04:54

    I also come from a family where we have a 50% chance of cardiomyopathy. I am 22 and have been tested twice and have no symptoms and am now thinking of getting pregnant.

    My question is this... could I still show up having it later? Or do you think I am in the clear and that I will not develope it? Should I tell my doctor that I would perfer a cesearean just incase, so that I don't have to go through the strain of child birth?

    My sister (who has it) and I have also been given lectures on not having childeren too, but I really want to start a family. It has always been my dream.

    I'm really nervous and could use some support!

    Thanks much!!


    [Re: IHSS and Pregnancy]

    Author: beckley (---.dialup.mindspring.com)

    Date: 03-30-02 04:00

    Dear Jacki

    It is the nine months of carrying a baby that puts a huge strain on the heart. A cesearean wouldn't prevent getting worse after the baby is born, although it would obviously be a little easier than labor.

    Please see my reply to your other post.



    [Re: IHSS and Pregnancy]

    Author: Patrice (---.jersey.net)

    Date: 04-11-02 08:30


    I was diagnosed with HCM 6 years ago. I have no real symptoms. I found out about it by accident when I had an EKG. My father had IHSS for years before being transplanted.

    I am now pregnant and heading into the home stretch. I have approximately 8 weeks to go. I'm having an ECHO in a few weeks to determine how thick my heart is. What type of delivery is recommended - vaginal or C section? Any information is appreciated.


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