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 MissEmzilinie » Tue Dec 30, 2014 2:00 pm

Hi Holly (and Helen and all the other lovely posters.)

I know I'm pretty late to the thread and I know this might not be seen but..I'm new so I thought I'd comment on something.

So, I totally get where you're coming from. Fiona Walker is my specialist, too. When I first saw her I was more than single, but very aware that I may have difficulties having my own children. (I'm TOF including dextracardia and had a TOPC when I was 8 - now 25.) So I asked her and she told me the facts and she also made a lovely comment that she hoped to see me loved up soon.

I am now and meeting and getting to know my partner was horrible because I've almost decided (70/30) that I'll more than likely adopt. (My partner and I are just about to celebrate our 1yr) Making that decision has been the hardest thing I've done in my life (that I've been awake for, at least) and telling him comes just under it. Telling Fiona might be hard too but I don't think I'm emotionally strong enough to be able to go through the things that Helen, and others, have. I read about it in a book and weep for hours.

Besides, I'm a teacher, until I can adopt a child of my own I'll teach and spend all day with over 60 of other people's kids.

It's your decision, and your partner's but this is what I've decided. I think.

I now just hope it's not seen as a selfish one.

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

Postby gosnold » Tue Jan 27, 2015 8:35 am

Hi Holly,

I am 27 and really want to start a family !!! I have coarctation of the aorta, parachute mitral valve, mitral valve regurgitation and aortic stenosis. I am in a similar situation where by I am waiting to see whether I need a valve replacement prior to getting pregnant. I have been told by the cardiologist that I may be able to have a biological valve which may be safer with pregnancy.
I just find it frustrating waiting for the decision as I really would like to start trying for a family. It's so difficult to be faced with the decision if you don't feel ready for a baby but I'm sure the right decision will come to you. I think as GUCH women we face so many decisions which wouldn't normally be faced and it isn't easy.
I am waiting at the mo for a pre pregnancy appointment with the cardiologist who specialises in GUCH and pregnancy so hopefully this will give me more clarity.
The GUCH team has been brilliant in supporting me and answering my questions I'm just impatient and want everything to happen at lightening speed lol

Abbie
Co-archtation of the Aorta
Parachute Mitral Valve
Mitral Valve Regurgitation
Aortic Stenosis
Aortic Stent
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Re: I'm contemplating pregnancy - your experiences, please!

Postby lifeandotherstories » Wed Jan 28, 2015 3:03 pm

Hi all.
Just joined the forum & so just seen this post.

I have tricuspid atresia, pulmonary atresia, transposition, rubbish pulmonary arteries, ASD & have half a right ventricle. I had a fontan in 1990, and my first pregnancy in 1995. Unfortunately I lost that baby, but my son was born in 1996 and my daughter was born in 2003.

I do know it is unusual for fontan's patients to have children - but obviously it is possible!

I won't pretend that everything was easy - far from it. Pregnancies were terrible, requiring long stays in hospital. Both children have CP & are wheelchair users. But they are also intelligent, kind, funny, etc. All the things we want our children to be and I adore them.

My husband is wonderful (we got engaged just after my fontans) and I would say you need a strong relationship. Just as everyone should have if they want to create a child together.

So I say you know if it's the right thing for you.
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Re: I'm contemplating pregnancy - your experiences, please!

Postby paula-43 » Thu Jan 29, 2015 10:57 am

Hi Holly, well i will tell you my story- i was born with T.O.F.with my first OH surgery when i was 3yr old (1973), ive since had 3 children and in-between 5 miscarriages, in 2001 uptill now ive had a bovine valve fitted a pacemaker, ive fogoten how many cv's, ive allso got regurgitation of the tricuspid valve, very close to be put onto the transplant list, none of my pregnancies were planed and i had no intervention from my cardiologist let alone a guch specialist!
in 2005 my husband had 3 heart attacks (mi's) but is ok. we then decided we wanted a daughter as our other 3 are boys, we went to see my guch specialist and he said if my sterilisation could be reversed it would be ok but i would be in hospital for the full 9 months under obs, i was 35yr old by this time.
while we were deciding on this our eldest son and his wife phoned to say we were going to be grandparents so having our own child put a different outlook on the situation and decided against having our own. we now have 5 grandchildren!!
we both love children and have a big house so we looked down the road of fostering and adopting process but we were told that due to my health issues we would not be eligible, we appealed against this decision but still no luck. my argument with them was if i had another child of my own they wouldnt take that away from me because of my health!!!. weve also tried private care/fostering but i still dont fit the criteria.
i wish you all the best in your decision i know its hard but be strong and believe in yourself...........

as for any MALE!! making comment on childbirth please keep your comments to yourself!! you have no idea of how a woman feels, especially when talking about child birth/pregnancies.

xx Paula
TETRALOGY OF FALLOT
REPAIR 1973
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Re: I'm contemplating pregnancy - your experiences, please!

Postby Geraldine west » Mon Feb 09, 2015 1:08 pm

Hi Holly
My advice would be 'don't delay'. I've had two children. The most difficult thing I had to deal with was tiredness. Tiredness during pregnancy - so intense at times that I felt too tired to breathe. This was manageable with the first pregnancy, I stopped work as soon as I knew I was pregnant, took life very easy, and spent most afternoons in bed. A different story with the second child, who came along two and a half years later. Trying to rest with a toddler was virtually impossible. However I appreciate you might not be contemplating two children. But tiredness again was an issue as the children grew. Pushing a pram, especially during the winter months, taking and fetching them from school, ferrying them to ballet, brownies, swimming, friends' parties etc, it was exhausting. I was in my mid thirties by the time they were teenagers - I would not have wanted to be any older. But I wouldn't have missed it for the world. So just go for it....
Geraldine
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