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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

congenital heart defect 23wks pregnant, amnio, miscarriage/termination q

71 replies

manitz · 21/06/2007 12:54

Yesterday they did the anomoly scan and could only see two chambers of the heart and diagnosed and VSD. am being referred for a cardiac scan and amnio.

it seems from my reading that there is a 5% chance of a chromosonal abnormality of which it seems edwards syndrome is the worst. 95% chance that it is a heart defect without chromosone issues and it seems that amnio has a 1% chance of miscarriage.

I feel that I can cope with a child that has some quality of life, ie an operable heart issue or downs or ok but that I would terminate a child with edwards. Does anyone have any experience of
a) amnio - what causes the miscarriages?
b) miscarriage this late pg
c) termination at this point in pg?
d) VSD heart defect?

I would be really grateful for any advice as I want to go into my first appointment next monday as well informed as possible.

OP posts:

Marina · 26/06/2007 16:14

I don't think you're being a wimp either Manitz. You know where I am if you need me and as Rahrah says, Sands is there for you too. You are very much in my mind right now XXX

honeyapple · 26/06/2007 16:24

Dear Manitz,

My thoughts are with you and I admire how incredibly brave you are being. You are definitely NOT a wimp.

Wilbur · 26/06/2007 16:31

Manitz - I am so terribly sorry to hear this. Take care.

pinkteddy · 27/06/2007 19:21

so sorry to hear this Hope you are OK.

Pixiefish · 27/06/2007 19:26

so very sorry Manitz

Saturn74 · 27/06/2007 19:44

Dear Manitz,
You are being so very brave.
Whatever decision you make will be right for your family.
I have replied to your email.
As Marina said, you know where I am if you need me.
Thinking of you.
Humphrey (Nerdmagnet)

WaynettaSlob · 27/06/2007 19:56

Just want to say am thinking of you Manitz........

jellybeans · 27/06/2007 19:58

Hi Manitz, so sorry for what you are going through I have lost a DD to extreme premature birth at 20 wks and also had a TOP for severe chromosome anomalies and hydrops at 23 wks. There was pretty much nil chance of survival since her organs were not growing. I had the amnio with the DD that we lost as they would try in utero treatment if her chromosomes were normal but not if they weren't (as the underlying cause would still be present). Sadly we got bad news and reluctantly decided we couldn't watch DD suffer. I didn't m/c due to the amnio. With the other DD we lost I got high risk downs result but didn't have an amnio since we felt we could cope with Downs rather than late TOP or m/c and the odds were that she was OK. DD didn't have downs but I went into labour too early at 20 wks and DD was born still. I will be thinking of you and agree with Rahrah that sands is of great help and there are alot of us having been through this situation. You are in my thoughts xx

Chooster · 27/06/2007 21:27

Am so so sorry Manitz - its such an awful time and you are being so so brave. We had a similar experience to jellybeans, a TOP at 21 weeks due to chromosme anomolies and hydrops. The decision is never easy, no matter what the circumstances and I'll be thinking of you. Just look after yourself and never beat yourself up - you are making the right choice for your family xx

lucyellensmum · 27/06/2007 22:16

Manitz,i have no experience of this but felt i had to post. You are not being wimps, you are making the right decision for you, your family and your baby, every situation is different and different factors affect peoples decisions. You know in your heart of hearts that you are making the right decision and i do admire your bravery. I wish you well and i am so so sorry you have to go through this.

Woooozle100 · 28/06/2007 12:34

Manitz

I'm so sorry to read your posts. I don't think 'wimp' applies at all. You are in an agonising situation and have made a decision based on what is best for you and your family.

The family which I spoke of had no knowledge of their daughter's problems prior to her birth. Nor did I. I think having to face up to these sorts of decisions is just awful, really. Although it may / does give you and your family you the chance to avoid even more wrenching / heartbreaking times in the long run.

My thoughts are with you and I wish you all the best under the circumstances. Be kind to yourself and take care x

Original poster

manitz · 28/06/2007 16:39

thanks every one. I think you might have guessed I was in a bit of a bad doubting state tuesday and wed. We have booked the first appt for next monday and i'm feeling better about my choice now. I came to terms with the fact that there is no good outcome so I have to go with the one that is right for us.

It's really helped to know others have been in this situation and Ive just joined sands so am going to go back there and have a read to help me prepare for monday.

DD1 is very interested in what is going on and has picked up on it all. i've told her that the baby isn't complete enough to survive outside but that it's happy where it is. Had some therapy shopping today and bought them both heart necklaces. I'm going to get a ring and engrave it and dh is going to get a watch. sounds trivial but I feel then i'll have something solid which represents the baby and girls will know they had another brother or sister.

Thanks again for all your support and messages.
x

OP posts:

honeyapple · 28/06/2007 19:42

The necklaces sound a lovely idea. All the best for Monday. Will be thinking of you.

Habbibu · 28/06/2007 20:08

Hi Manitz

Just wanted to say hello, and send you my thoughts for Monday. My first baby was induced at 21 weeks 2 years ago. She had anencephaly. The day of diagnosis was absolutely the worst worst day of my life, and I thought I would never be happy again. The day of her birth, which I dreaded with all my heart, turned out to be a really positive experience in many ways. We were treated wonderfully by the hospital, and when our beautiful little girl was born, we spent lots of time holding and cuddling her, telling her how much we loved her. I miss her still, and it breaks my heart to think, talk or write about it sometimes, but thinking of her birth always gives me a funny sort of peace and joy. I know that some people don't want to see their babies in this situation, and cannot at all criticise them for that, but the one thing that I regret is not taking a camera. We have some nice pictures of her that the hospital took, but I do wish we had some of all of us together, and of me holding her.

SANDS is a godsend - I'm CSandP on there, so hope to talk to you there if and when you feel you need it.

Original poster

manitz · 11/07/2007 15:27

Hi
thanks again. I had a little girl last thursday. Feel I have been much supported by those on both mn and sands and in rl and feel lucky to have two healthy girls.

Whilst I feel very sad for no 3 (valentine after valentino rossi) and a little bit poor me, you are right the worst day was the diagnosis (and the injection) and it has got better since then. I am fully functioning and generally much better than I feared although I may relapse come october (due date).

I am content with the choices that we made and also content that there was no good outcome in this position but value what I can from it. Birth was alright habbibu and sort of enjoyed it as a time to say goodbye, likewise the week the kids were with granny and I could just cry and think about her. But I particularly enjoyed getting them back and their mercenary take on the whole situation.

dd1 - it can't be all bad I have a necklace. dd2 - what baby. was a bit concerned that at 4 dd 1 hadn't quite understood what was going on but she has been announcing it to any poor sod inquiring after my pregnancy so at least i dont have to worry about them - just console her victims.
x

OP posts:

Blu · 11/07/2007 15:37

Manitz - congratulations on growing your little daughter, and much sorrow for you that she wasn't able to grow more and stay with you. Love and strength to your family as you grieve. The bracelets were a wonderful idea.

bundle · 11/07/2007 15:39

oh manitz and all at the same time, for you and Valentine.

thomcat · 11/07/2007 15:41

Manitz - just caught up with this. I'd like to echo Blu's lovely words. TC x

theressomethingaboutmarie · 11/07/2007 16:19

Hi Manitz.

I've not encountered this thread before and wanted to add my support and voice to the other posters. You and your family have been incredibly brave and the decision that you have made is the right one for you.

Best Wishes

Marie

Alfie72 · 11/07/2007 22:51

I have met many families who are going through what you are doing now. I can only imagine how upset you must be feeling but as hard as it is do try and Keep as much as an open mind as you can until the specialists have looked at the heart in more detail as VSDS vary in size and severity. Also try not to think of the worse case scenarios just yet. Cardiac treatment these days is amazing. I would try and not research things yourself but write down all the questions you have for the drs and let them guide you. Once you have found out more- do get in touch with support groups and chat to other parents who have been through such an experience. I wish you all the very best and hope things work out for you and your little one.

Tiffanyaching1 · 24/12/2020 16:48

Hi Mantisz

I found your threat and was hoping you were still active on here. I had my 24 week scan yesterday and they referred me right to great almond street today and doctors have said my little.girl has 2 heart chambers and theres a chance she has a chromosome problem as she has fluid around her heart. They have asked us to consider termination but we are devastated it's our first baby and pregnancy and we have said we want the test which Carrie's it's on risks which I'm booked in for next week. But they said this would take weeks by which point I would be almost 7 months. Can you give me some advice what happened with your baby and the outcome? Thank you so much

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