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British Heart Foundation
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Pregnancy with Dilated Cardiomyopathy

Hello

I wanted to see if anyone has advice or knowledge or experience of pregnancy with this condition? I am 29 and was diagnosed at 22 with the condition. I am currently stable and in a much better position than 7 years ago due to the medication I take. In order to have a baby I would have to come off of Ramipril, Iverbradine and Spironolactone. But can remain on Bisoprolol. However my consultant has advised me not to do this I wanted to see if anyone has gone through it first hand that can help me make the choice whether to take the risk?

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I do not have first hand experience but I know one method used by my cardiologist if the patient really wants to get pregnant is to have a maximum of 3 month trial no drugs before one becomes pregnant. This means if you really not tolerate no drugs you can go straight back on them and will know pregnancy will not be tolerated. Tolerating no drugs does not mean pregnancy would be tolerated but it would give a better idea.

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There are are few Cardiologists with the experience of caring for women with cardiomyopathy. A larger maternity unit will have a such a person usually working with an obstetrician and midwife with some knowledge too.

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I have dilated cardiomyopathy due to another heart condition and I can’t carry kids in my womb as my heart can’t handle it. Idk if u can due to ur heart condition but looked into briefly adopting or finding a surrogate if or wen I’m finking of having kids.

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Hi Lauren. Sorry to hear you are having to deal with this decision. My heart problems were picked up while I was pregnant. I had likely been living (blissfully unaware!) with a heart condition for a long time before this, but the strain of the pregnancy worsened things and made it impossible to ignore. My daughter was delivered (nine weeks before her due date) the very next day as the doctors didn't think either of us would survive much longer if the pregnancy was allowed to continue.

Six years on and my daughter is absolutely fine, but my heart function has never improved. I'm on lifelong medication (similar to yourself) and have a CRT-D device fitted. A few years ago I was asked to consider going on the waiting list for a heart transplant. I'll never know what my heart was like prior to pregnancy, but I do know that I didn't have the symptoms of breathlessness and fatigue that I have now. I am definitely not blissfully unaware of my heart problems anymore!

The hardest part of the diagnosis for me was the advice not to have any more children. I was absolutely desperate to have another child, partly for myself and partly because I didn't want my daughter to be an only child. My cardiologists, while advising very strongly against it, were supportive of my need to make that decision for myself. They sent me to speak to some specialist cardiologists who deal with heart issues during pregnancy. As well as intervening when things went unexpectedly wrong (as in my case) they had also supported many women with pre-existing heart conditions through the process of conception and pregnancy. They were very honest about the risks, which was hard to hear, but they were also willing to support any decision I made, even if it went against their very strong recommendation not to become pregnant. I would ask your own doctor if there is anyone similar you can speak to in your area, as that will definitely be the best and most reliable source of information.

As others have said, you would likely be taken off your medication for a trial period to see how your heart copes with that. Unfortunately, there's no way to trial being pregnant, so choosing to become pregnant is very risky and you have to decide whether it's worth the gamble. Eventually I decided not to have another child as I didn't want to risk my daughter being an only child with no mother. I don't know whether I might have decided differently if I didn't already have one child. And even though having my daughter has permanently damaged my heart and shortened my life, I don't regret having her at all.

Really there is no right answer and only you can decide what is the right path for you. All you can do is to make sure you have absolutely all the information you need to make an informed decision, so you need to be speaking to the cardiologists who work in the field of pregnancy.

It's such a difficult decision, I know. Feel free to message me directly if you think I can help in any way. Lots of love xx

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I don't really have any experience of this but I am currently in the process of having a baby via surrogacy and there is a lady in our Facebook group who has DCM and she is using a surrogate to have a baby. It might be worth considering if you deem the risk too high to have a baby yourself x

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