I'm contemplating pregnancy - your experiences, please!

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I'm contemplating pregnancy - your experiences, please!

Postby NewHolly » Wed Feb 19, 2014 2:36 pm

Hello!

Firstly, I'm really glad that this space exists for people to share their concerns and just generally to support one another. For the last few days, I've been trawling through posts here on similar topics, and you come across as a lovely bunch.

Anyway, I have aortic valve stenosis and regurgitation. I had open heart surgery when I was ten to repair the valve a bit. I'm now 25. I’ve never had symptoms. I was referred to Dr Walker at the London Heart Hospital when I moved down to London a couple of years ago and when I saw her last, we spoke about pregnancy. I've always imagined I'd have a child, and am in a very happy relationship, but I really wasn't planning pregnancy any time soon. For a start, I've only been with my partner for about a year.

Dr Walker told me that with my heart as it is, I could have a child ("although it wouldn't be a low risk pregnancy", as she said). There will come a time, though, when I'll need a replacement mechanical valve, and a pregnancy with a mechanical valve would be more complicated, in particular due to the drugs I’d have to take. Because she can’t predict when I’d need a replacement, she’d recommend that if I wanted a child, that I got pregnant in the next couple of years (seeing her first for a check-up, of course).

That was a lot to take in, for me. What’s worrying me as much or more, though, is the pressure it puts on my partner, and on our relationship. Although I hadn’t thought about getting pregnant so soon and am not feeling broody right now, I know I want a child at some point, and if it was completely clear-cut that the safest way of having that child was to do it soon, I think that’s what I’d want to do. I appreciate that this news is a real shock for my partner. He says that he’d like a child with me (which I hadn’t heard from him before, and which was lovely to hear :) ), but that he really doesn’t feel ready yet. He hasn’t got a plan for the rest of his life because he still feels young (he’s 28). He acknowledges that he might feel ready for a child in the next two years, but couldn’t promise me that now.

So what I want to know is: is the two year period a real deadline? If it’s really much worse to have a child when you have a replacement valve, then I’ll have to consider it as a real deadline, and let my partner know that it’s really important to me to have a child in the next two years. On the other hand, if pregnancy with a replacement valve would just be a bit more complicated, but not much less safe or unpleasant, then I wouldn’t want to put pressure on my partner to commit to something he’s not sure about yet. In the latter case, we could just take it easy, and see how we felt about pregnancy once we’d been together a bit longer.

On the strictly medical side, I think I’ll ask Dr Walker for a comparison of the risks (to me and to the child) of pregnancy with my valve as it is, versus the risks with a replacement valve. On the practical and emotional side, I’d really like your advice, and to hear your experiences. Has anyone been through something similar? What is it like to be pregnant with a heart defect? And what’s it like to be pregnant with a mechanical valve? Can you think of anything else I should consider? Maybe there are some partners of people with congenital heart defects on this who had this experience from the other side?

Thank you to anyone who took the time to read to the end. It already feels good being able to set my thoughts straight in writing.

Holly x
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Wed Feb 19, 2014 8:24 pm

Be it someone with congenital heart disease or someone in the general population, the risks always increase with age.

There's no discrete line or cut off, but certainly having a replacement valve with mix things up - in terms of risk, to have a replacement valve must be warranted and so it would seem necessary. Whilst people here can likely support you in some form, these are ultimately questions for your specialist.
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Re: I'm contemplating pregnancy - your experiences, please!

Postby NewHolly » Thu Feb 20, 2014 10:52 am

Adam, thanks.

I wonder if perhaps my meaning got lost somewhere in that very long message. I should be clear that I'm not looking for medical advice.

I'm weighing up the pros and cons of pregnancy with my own (albeit faulty) valve versus pregnancy with a replacement. I hope to find out the risks of each from my consultant, but I think there's generally also an emotional element to any decision involving fertility. It's on this emotional side that I'd like help. Because I've never had symptoms, I'd never considered that my life might be different from anyone else's. I also don't know anyone else with a congenital heart defect. I've therefore never thought about how the experience of pregnancy might be different for someone with a heart defect, and I'd like to hear about that from someone who's been through it. If anyone can help me to flesh out the practical and emotional side of this decision, I'd be grateful.

In short, I'd like the comfort of hearing from anyone who's been through something similar, or even the partner of someone who's been faced with a decision like this. I know my concerns are trivial compared to those of many people who use this forum, but this past week has been the first in which I have really confronted that I might have a future which will be different from that of my friends.

Oh dear; I've been long-winded again ...

H.
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Thu Feb 20, 2014 12:44 pm

Wow this feels like terrible pressure on you and your parther.
Even if you started trying their is no guarrantee you would get pregnant quickly.
I personally feel that if you are going to become a parent you and your' partner really need to be 100% sure that you are ready for it and really want it, we're talking about a child's life that you could screw up.
Sorry if that's harsh but pregnancy is very hard on you and your body and bringing up a child is too.
Are you ready for it?
I have a heart condition and we started trying for a baby 2 years after we were married. I was 28.
In the next three years I had an early miscarriage and then after a break got pregnant again and had our son Eddie who was stillborn at 24 weeks because of placental failure. He was born in 2001.
It was an incredibly difficult pregnancy, I was off work and on total bed rest immediately and then was on oxygen from 8 weeks our first scan. My husband had to work so I was on my own a lot of the time.
After Eddie was born our relationship really suffered and we went to counselling to try and help it.
We are still together and now have a beautiful 7 year old girl who was born through surrogacy. :D
Looking after her can be hard work too though, although she does understand that Mummy gets tired, needs to stop and get her breath back etc and Daddy's very good at playing football with her :D

I really feel you need to think about this really carefully before rushing in to anything. You have to think about your' health, your partners needs, a child's needs and your' own.
There are other options like surrogacy and adoption, but only you will know what is right for you.
Best of Luck.
Love
Helen
x :)
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Re: I'm contemplating pregnancy - your experiences, please!

Postby NewHolly » Sat Feb 22, 2014 5:26 pm

Thank you so much, Helen, for taking time to reply. That was a very considerate and sensitive response. I was really relieved to have someone recognise that this is tough (if I'm honest, I'm still a bit upset and looking for sympathy), but also to put this problem into perspective. Your experience sounds terrible. I'm so glad, though, to hear that you now have the child you wanted. And, importantly, that you and your partner got through all that together.

I think you're absolutely right that the consequences of having a child when you're not ready are worse than having a truly wanted child with a medically difficult pregnancy or through surrogacy or adoption. At the moment, my relationship is far more important to me than having a child. The best thing now would be for me and my partner to get all the information, and then just to forget about this! But that's easier said than done...

Thanks again, Helen.
Holly x
:)
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Sat Feb 22, 2014 6:14 pm

yea I'm a killer for tl;dr
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Sat Feb 22, 2014 10:54 pm

What does that mean Adam?
Helen
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Fri Feb 28, 2014 5:18 pm

sorry only just saw this , the site logs me out after a while, another issue with it..... yawn.

tl;dr - too long ; didn't read
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Re: I'm contemplating pregnancy - your experiences, please!

Postby elizabeth » Fri Feb 28, 2014 8:33 pm

That's the rudest thing I have ever seen on here. And I've seen a lot. :evil:

Holly, ignore him, write as much as you like and very best of luck with the decision. I really hope you get what you decide in the end.
TGA - 1976, Mustard 1977 & baffle repair 1984.
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Sat Mar 01, 2014 5:56 pm

elizabeth wrote:That's the rudest thing I have ever seen on here. And I've seen a lot. :evil:

Holly, ignore him, write as much as you like and very best of luck with the decision. I really hope you get what you decide in the end.


Xx
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Sun Mar 02, 2014 7:40 am

Mustard wrote:sorry only just saw this , the site logs me out after a while, another issue with it..... yawn.

tl;dr - too long ; didn't read


You know what Adam you really are the rudest and most insensitive person I have ever come across on this board. You can send me apologetic PM's as much as you want I'm pretty sturdy but this is not my post , it's Holly's and Holly's issue and I can't believe you can be so dismissive of what is one of the most important decisions in a woman's life.
I'm assuming from your name that you are a man and so won't have to face this dilemma, well lucky you. I'm not saying men can't comment on this but if you feel the need to comment please consider the feelings of the poster and all the other GUCH women who face the children question every day.
I lost a child, two children in fact and Holly may have to go through the same to achieve her dream of becoming a mother, or she may decide not to try at this stage. Whatever it's not going to be an easy decision and you can at least respect that and either don't read or don't comment.
Helen
x :x
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Sun Mar 02, 2014 12:10 pm

clearly i didn't see it that way.

how come you were up so early on sunday anyway mate?
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Gingerbread Man » Sun Mar 02, 2014 6:34 pm

Hi Holly.
O.k., I'm a man so I know it's not quite the same but I had two repairs for aortic stenosis as a child. Despite other heart defects I lived a totally normal life until recent years, playing loads of football and putting my heart through pretty heavy strain. Now I have two teenagers and one slightly younger; plus CHD has caught up with me with two more open heart ops in the last few years. I can only speak from my own experiences, but looking after yourself really carefully, staying engaged with the world and especially those close to you and being prepared to sacrifice a lot of years to parenting, it can work. I still work full time as well, the tiredness is more than compensated by interest.
It's amazing how much you can achieve if you really want it (and I could have done so much more if I'd looked after myself sooner so am no example).
I wish you luck Holly. Plus I've loads of wonderful friends and colleagues who have no children; it's not necessarily everything, although important for a lot of people, I know that.
Jonny
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Re: I'm contemplating pregnancy - your experiences, please!

Postby skip » Mon Mar 03, 2014 8:41 am

Holly and Helen,

I think many of us are embarrassed about the response you got on here , I hope that you are able to see past that post and see the value and warmth that this board offers people.

In terms of pregnancy I won't get involved in that issue, simple reason that I will not face that issue.
I am aware that dr walker is one of the countries top specialists when working with guchs and pregnancy, so at least you are seeing the right person.

Maybe the somerville foundation could look into putting a more recent/ relevant article together regarding pregnancy as there have been a few threads about this, with more people now being able to live more of an active and full life this will be more and more of an issue for many women...and worried partners.

Just to echo what another poster put I'm a father to a 4 yr old, my own health could be better but it could be loads worse, at times things can be tough but is it worth all the tiredness and hassle.......absolutely!
All the best with getting some positive replies!
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Mon Mar 03, 2014 10:29 am

it's refers to my attention span , not the content specifically! Not sure who is embarrassed though?
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