Dilated Cardiomyopathy & Family Planning

[Missjaay]

I was diagnosed with Cardiomyopathy at age 28 I'm now 31. My EF was year was 44% raised from 38%/39% when 1st diagnosed

I have tried to speak to my professionals about family planning and being able to carry a child. The professionals seem to be skirting around this idea and I've been told that I can't get pregnant right now and bee offered contraception.

I am wondering if someone else has a similar experience or had a journey of being pregnant whilst having a heart condition?

Thank you in Advance

[10gingercats]

Not sure how useful this answer may be but I had a hole in the heart,undiagnosed at the time but later said to be congenetal and I had full term birth but needed a caesarian for another reason at 9 months .Maybe a question to ask re the caesarian option?

[Missjaay in reply to 10gingercats]

Hey, thank you for sharing ❤️No this is useful, I have an appointment with my cardiologist soon and I want to go with as many questions as possible.

I saw a gynecologist and they indicated that pregnancy could be risky for me. I appreciate you replying 🙂

[10gingercats in reply to Missjaay]

If this is a much wanted baby you need to know exactly why the pregancy is risky so you can choose whetehr to take the risk.....and what are the risks?

[Missjaay in reply to 10gingercats]

The risks that was shared by the gynecologist was that pregnancy pit pressure on the heart for somone why doesn't have heart failure, she explained that with Heart Failure the risk increases. Could be fatal for me. I guess I was wondering of it was completely impossible for me to carry a child.

[Monkeym]

I hav bicuspid aortic valve, I was classed as a high risk pregnancy with my daughter so had extra appointments with both cardiologist and gynecologist, the gynecologist were always more worried than the cardiologist. The problem with pregnancy and heart conditions is the extra blood having to be pumped around our body. I did have some complications during pregnancy, shortness of breath at a very early stage and heart palpitations and was put on betta blockers, there was talk that I would need a C-section because of my heart by the gynecologist but cardiologist said natural was best and I did have a natural birth. I would say definitely speak to cardiologist..

[Missjaay in reply to Monkeym]

Thank you so much for sharing your journey, I have an appointment with Cardiology in June. Will definitely have that discussion with them x

[ScoobyDoo71]

hi, I found this article that discusses cardiomyopathy during a previous pregnancy. Although it doesn’t fit your current circumstances it gives up to date research around risks and possibilities of pregnancy with cardiomyopathy. Perhaps worthwhile taking this with you to cardiologist appts. If you do choose to pursue pregnancy ensure you have pre pregnancy counselling and get a combined multi professional team expert cardiologist that works with specialist obstetric team. I think Manchester does this.

academic.oup.com/eurheartj/...

Good luck

[Missjaay in reply to ScoobyDoo71]

Thank you so much for finding this article and sharing it. I've never taken an article or research to any consultants appointment before. I have heard that there are multiple professional teams in Bart hospital ( I'm from London)

[PrintingInk]

Is your cardiomyopathy an inherited condition? Do you see a specialist cardiologist? I’m wondering if it is inherited then somewhere like Barts would be a good place to go. You can always ask for a second opinion, good luck

[Missjaay in reply to PrintingInk]

Hey, so I had the genetics test at Barts and they concluded it wasn't inherited. Mine is not a specialist cardiologist, it's one at my local hospital

Depending on my upcoming appointment I will probably get an 2nd opinion, maybe private

[Milkfairy Heart Star]

Hello,

There are Cardiologists who specialise in caring for pregnant women heart patients, they tend to be members of the UK maternal cardiology society.

ukmcs.co.uk/about

There is a Cardiologist at Barts who is a member of the UKMCS.

The forum guidelines ask us not to name individual doctors, however I can message you their name and details if you wish.

You can ask your GP or current Cardiologist to refer you to a specialist centre for further advice.

There are a few centres that provide pre pregnancy counselling and pregnancy care for women heart patients.

The multidisciplinary team includes Obstetricians, Cardiologists, Anaethetists, Cardiac Nurses and Midwives.

Here's an example of one at the Royal Brompton in London.

rbht.nhs.uk/our-services/he...

Cardiomyopathy UK is another resource. They have a helpline.

cardiomyopathy.org/

Good luck

I hope you are able to access the support and counselling you need.

[AH31]

Hi, I have just read your post and can relate.

I am 35, getting old lol

Born with congenital heart disease, I have been very fortunate and had a few operations to give me a good quality of life.

The whole pregnancy/ staring my own family hasn’t hit off as of yet. I have annual appointments with my cardiologist, they always ask me about becoming pregnant. Over the years I have pushed it to one side but in 2022 ( I was 32) I decided the answer will be yes.

They told me I would need my attic valve replaced before the pregnancy. Eventually in February 2024, I had the operation, followed by a cardiologist appointment in November 2024.

There I was told everything had been successful but I would need an excercise test and mri before I could get the go ahead for pregnancy. I am still waiting for tests and results, and like you I am still on conception. I know I haven’t got the same heart condition as you but I can relate to dodging the question of starting a family.