I'm contemplating pregnancy - your experiences, please!

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

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

Postby vicki » Mon Mar 10, 2014 10:58 pm

Hi Holly,

I have three children- the first two not really planned but the third one was and I had him when I was 30. As my heart didn't get back to 'normal' after I had him I was advised not to have any more. My consultant AT&T he time was Lorna Swann - she said if it had waited until I had been in my 30's to have children I may only have had one. (Note *may*)

I know several women who have mechanical valves and who have had successful pregnancies - it's certainly a bit more tricky as you can't take warfarin during pregnancy and have to switch to heparin injections. I don't know if it's any more risky to have a baby with a mechanical valve or whether it's just more complex- you're never going to be low risk anyway.

The whole 'have a child in the next couple of years' thing might be her preference - but it sounds as if it's not yours! It's hard to predict when things will need to be done- valves replaced etc and it could be two years, one year, ten years....

I wouldn't worry about it (easy for me to say) and just get on with enjoying life with your partner. Take him with you when you go to your next appointment and discuss it together.

If your on Facebook I can put you in touch with a few women who have babies and mechanical valves and someone who is thinking about it. I'm Vicki Hendry and my profile is a drawing which says CCTGA in red 4 year old writing.

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

Postby Mustard » Mon Mar 10, 2014 11:08 pm

HelenB68 wrote:
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


don't send me sexist pm's either please. :D
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Tue Mar 11, 2014 10:53 am

I haven't sent you any PM's I don't know what you are talking about.
Helen
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Tue Mar 11, 2014 10:56 am

pants on fire....
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Tue Mar 11, 2014 9:49 pm

Show me what I've sent you then that offended you.
I won't be accused of doing something I haven't .
Helen
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Tue Mar 11, 2014 10:02 pm

no offence here.
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Wed Mar 12, 2014 9:29 am

So if I haven't offended you why are you saying I made a sexist comment and calling me a liar.
You are really begining to offend me as I don't find this funny.
Helen
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Gingerbread Man » Wed Mar 12, 2014 8:20 pm

We're all GUCH patients and no doubt have many difficult choices and issues to deal with each day. It would help, I hope, if we support one another. If we've caused offence, which is sometimes easily done, recognise it so.
Jonny
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Mustard » Thu Mar 13, 2014 12:18 am

yes, offence definitely not intended.
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Rebeckaa » Sat Mar 15, 2014 9:57 am

Hello holly,

I've not had experience yet but I can relate exactly to how your feeling as I've been told very similar if you want to talk via pm feel free to message me. One thing I will say is the liaison nurses at the London heart are fab! They were excellent for both me and my other half to talk through everything with, so keep them in mind too....

Rebecca xx
TETRALOGY OF FALLOT
Oct 1989 - Fallots - Right sided Shunt.
June 1991 - Fallots - Full Correction.
April 2004 - Wound Debribment [sternum]
April 2012- Wound Debridement [shunt]

On going wound problems
Possible Valve replacement...
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Re: I'm contemplating pregnancy - your experiences, please!

Postby ellieandbump » Sat Mar 29, 2014 10:46 am

Hi Holly,

I'm really new here, still waiting for my introduction post to be approved. I thought I'd reply because I'm currently pregnant and dealing with chd too, I was born with transposition of the greater arteries, repaired at 5 days old. I've always been monitored and had regular checkups I'm under a specialist clinic for my condition.

I'll be perfectly honest, this baby was a total surprise, and I've known since my first adult appointment with my professor that I would be a high risk pregnancy "although we expect you to have a fairly 'normal' experience". Because of that my partner and I decided we would decide and actively try so I could let my medical team know that I was going to try and have a baby to have everything in place for further care, it's just that it didn't quite go that way.

I'll be honest, I'm actually glad it happened now while I'm 25 and I'm young enough to cope with it all. I had a really rough early pregnancy. As soon as conception happened I experienced issues with my heart racing, dizziness and other symptoms. They only calmed down when I got near to three months pregnant. My consultants couldnt find any explanation for the issues I was having, I was off work, couldn't do much by myself and when I discovered I was pregnant the light bulb went off.

I occasionally still have funny turns where my heart goes a bit crazy for a few minutes. I'm 16 weeks pregnant tomorrow so I've still a way to go.

If you can plan for it do, everyone was on catch up because we hadn't planned this baby. Yes it could take you a long time to fall pregnant, on average it takes couples a year to conceive, but having everyone ready to go when you do fall pregnant is something I wish I'd had.

Yes there is a lot of pressure on your partner, mine has dealt with it all like a pro, honestly can't sing his praises enough, but all you can do is talk about it openly and honestly with each other and see what fits right for you. There is also a lot of pressure on you to decide what you want and so quickly. We were at least lucky in that we both felt like we couldn't wait to be parents, we just wanted to wait to have things like a house and some money behind us etc.

I remember when we initially had the "so, this is serious and we think it's really going to last the distance" conversation, I found my partner really responded to me giving him all the information I had on my condition and the effects it might have on my life and of course our life together. I literally just gave him all the facts I had so that he could digest them, we then discussed how that would affect us having a baby etc.

Whatever you guys decide, there will be unknowns, so all you can both do is follow what you feel is right and tackle the rest as it comes.

I hope this helps :)
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Re: I'm contemplating pregnancy - your experiences, please!

Postby HelenB68 » Sat Mar 29, 2014 9:55 pm

Hi Ellie,
Really hope you have a happy outcome.
Love
Helen
x :)
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Re: I'm contemplating pregnancy - your experiences, please!

Postby ellieandbump » Sat Mar 29, 2014 11:31 pm

Thanks Helen, lots still up in the air, not making any plans for the birth as no one is able to decide whether I should be allowed to go naturally or have a section. It's hard, with so little history of women with my particular condition having babies, everyone's kind of winging it a little lol!
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Re: I'm contemplating pregnancy - your experiences, please!

Postby sophstar007 » Sun Mar 30, 2014 3:09 pm

This so strange...I haven't posted on here since 2010 yet I came here today to find comfort because my best friend has just had a little baby girl, and she had a really rough time during her labour.

It's like you are in my mind Holly. I may not have the same condition as you but I am almost 25 and my partner of almost 2 years is 28. So I'm officially spooked!!

Seeing my best friend go through a really difficult labour has terrified me. I am so scared that I will not be able to handle the pressure on my heart of pregnancy, let alone the birth. My partner and I would love to have a child someday...he would even go as far to say if it poses any risk to me he won't let me so I know that we are strong enough.

I guess I can't really give advice or help Holly...I hope you find some answers from others and it helps you on what is right for you. I have had people tell me that there's always surrogacy and adoption as Helen said...but I feel like I need to experience the little miracle of a baby growing inside me. Maybe I'm a bit crazy for that but I can't help that feeling, the urge.

Ellie - good luck with your little bump!! I hope you are well and everything is going as smoothly as it can.

Sophie.
Xo
Mitral Valve Atresia
* Absent Left AV Connection, Straddling/Over-Riding Tricuspid Valve, Large Ventricular Septal Defect, VA Concordance
* VSD Total Cavo-Pulmonary Connection with LPA Reconstruction / Fontan / Small Right to Left Shunt (1993)
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Re: I'm contemplating pregnancy - your experiences, please!

Postby VBrown » Mon Mar 31, 2014 6:28 am

Hi Holly,

I just tought I would post a reply on here - I'm not sure if this thread is still active and you're still reading it, but I hope you are!

I'm 30 this year and in October last year I had a porcine aortic valve replacement so that me and my husband could 'more safely' try for children. I would in later years have another surgery to fit a mechanical valve.

I was told when I was about 19 about the problems a GUCH female could (not always though) face when contemplating pregnancy so this was always something me and my now husband knew about.

I cannot imagine the pressure it must put on you and your partner now, but as other people have said, you shouldn't feel pressured to have children now just because of your heart. Even though it isn't the easiest option, you could always ask for more information regrading biprosthetic valves as although it means open heart surgery, it will give you between 7-15 EXTRA YEARS to prepare yourself and your partner for children.

It's an incredibly extreme option I know, and I needed surgery as my heart was failing. It was struggling to pump for one, let alone if it had to pump for a baby aswell!

You need as much information as possible at this stage, and so does your partner. It's a huge undertaking.

I wish you both all the best, it would be lovely to hear how you go on with things :-)

Victoria.xx
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