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Antenatal tests

To terminate or not? 18 weeks? and a few questions please...

16 replies

CRAZYCREW · 20/08/2011 21:51

Okay I posted on here last week. My daughter has a baby with cctga (heart wrong way round and goes throught quite a lot.

She is now 18 weeks pregnanat- been on injections and no periods for 18 mths.

She went for the heart scan and they picked up what they think a small heart left side heart. Its not hypoplastic but will be treated along those line. It will ahve a single ventricle and the aorta is the wrong side and some valves need switching. It also has a big hole in the heart. We have spoke to small hearts matters and they have said that osme children if can survive the first op do very well indeed but at the moment the longest they are living are late thirties...

Shwas offered a termination with her son and he is doing amazing.

What would you do and why and also could she not have a medical termination and be put sleep as the private clinics deal with this dont they as dont think she would have the strength to go through child birth
She is diabetic and her blood suagars all over and going very very low some days... she is an amzing girl, so caring and loving and a fantastic mum.

any advise would be lovely. Thanks and love to all xx

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isitmidnightalready · 20/08/2011 22:22

I didn't want to leave this unanswered. What a decision. No-one else can make it for her. It's a life of hospitals and operations and agony but also deep joy, versus a guaranteed life of no such possible highs and lows. Good luck to you both,

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manitz · 20/08/2011 23:05

as is it midnightalready said, it's her decision and no one can make it for her. my daughter had a hypoplastic right heart and various other problems including tga. we chose to terminate at 26 weeks and I gave birth. I am not sure she can go to sleep this late on tbh but you are given morphine which helps you get through the birth. I had to be sure of that decision myself and not feel i was doing it for anyone else (except her), as a result i had come to terms with what I was doing and although I grieved afterwards i do not regret that decision.

Hard to give advice and I'm sure your daughter is already aware of some of the issues to do with heart matters because of her son.

I hope you are all able to cope during this time, i have read some of your other messages and it sounds like you are being a great support to her. x

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bagelmonkey · 20/08/2011 23:19

What a horrible situation for your daughter and for you and the rest of her family.
There are no right or wrong answers. Your daughter must chose what she feels is the best (or least bad) course for her at the time.
She is fortunate to have a mum like you who is obviously trying to help her all you can.
I'm sorry I have no advice to offer, but I wish you all well.

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Cantdothisagain · 21/08/2011 08:11

I am sorry your daughter finds herself in this position. As the previous posters have said, it's a decision only she can make but it's so hard to know what to do without being able to see how badly her baby would be affected. I have terminated twice but in a way the decision for me was easier because neither of my babies could have survived anyway. I wonder if ARC could help? Google ARC; they offer impartial expert advice for women who are trying to understand what antenatal scanning and screening mean for their babies and on different kinds of termination, I think.

Good luck to your daughter and you; it's such a hard, sad time.

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blacktreaclecat · 21/08/2011 08:36

Marie Stopes and Bpas will do surgical terminations up to 24 weeks.
What a difficult decision for your daughter.

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EggletinaClock · 21/08/2011 14:23

I'm so sorry you're all going through this. It's a terrible time but it is only a decision she can make.

For what it's worth, I terminated primarily because of severe heart problems but had been told there was over 90% likelihood there was a chromosomal problem as well (which there was and it was a fatal condition). My thinking at the time was that I couldn't bear the thought of a baby having to go through massive open heart surgery with a poor prognosis and then, as you say, a restricted lifespan. I felt that to continue with the pregnancy would cause suffering for the baby, myself, my husband and my existing child.

I hope she can come to a decision she is comfortable with.
x

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CRAZYCREW · 24/08/2011 22:21

hello just thought would update that my daughter has decided to keep the baby depending on the amnio results.. it was very hard and still very hard as there is no cure but just pallative care but they are only 80% it says on the report the baby has the condition and although txxhat high she feels in time say in 15 years or say technology may of changed again and find more a corrective route for the new baby. She is so strong and i love her to bits and so proud but would of been proud either way to be honest.

Good looking and thinking about all you ladies...xxx

nicola x

god bless you all

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PacificDogwood · 24/08/2011 22:24

I have lurked on this thread, but not posted as I felt I had nothing to add.

What a very brave decision your DD has made.
I hope the rest of pregnancy goes well and her little one surprises everybody - in a good way!
Much strength to all of you.

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UnrequitedSkink · 24/08/2011 22:25

Couldn't read and not post - I think she's amazingly brave and strong and I wish her and the baby all the luck in the world. x

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mrsbigz · 24/08/2011 22:25

aww Nicola, thank you for updating, i've been thinking about you and your daughter! she sounds like a very strong young woman, and someone to be very very proud of. i bet part of her decision though stems from the fact that she has such a wonderfully supportive mum in you xxxxxxx

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CRAZYCREW · 25/08/2011 11:27

awww thanks.. I really am not good in these situations and found it very very hard to talk to her about it really but have kept her busy taking her out etc and talking. She is amazing I really mean it. She is ahving and amnio next week. The report we got through said they are 80% sure nothing can be corrected and only pallative care care which consists of three operation and even then the child will get slight breathless after sport etc but they do live a goog quialty of life but the life expectancy into adult hood poor but the children operated on at birth are now doing their a levels and who know some new medice or new operation or way of thinking may kick in. I know it hurts hurts her to think why me and whay cant my babby just be normal but how i see it she is unique and got every care anybody could want as he is brillinat. You know she had her son and carried on her apprecticeship and worked shifts at the hospital simply so she could better herslf and the sort of life her child would have. She will now go to uni in a couple of years as got her life ahead of her.

Her sister is flying home from Turket been in Istanbul being an au pair for 2 mths before she goes to uni in London so it will be nice for them to chat and maybe she will open up to her... i SO HOPE we get soem good news when baby is born as she deserves it doesn't she ...

I love her to bits and yes she may be only 18 but Harvey could not ask for a better mummy as he bakes, reads and has a routine and her money is her son now.

I wont go on but will keep you all updated shall I ?

Love to all ypou ladies though what ever your decisions and I think of you all and how harfd it is. I ahve four children 20, 18, 10 and 2 and all healthy so it makes me think how lucky I am and how you should cherish what you have...

Nicola x

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winnybella · 25/08/2011 11:39

She sounds like an amazing person. All the best to her and her baby.

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mrsbigz · 25/08/2011 14:00

Nicola - yes please do keep us updated. and if she wants anywhere to talk to people who have been through similar situations (especially inbetween the amnio and getting the results, as i know most of us found the waiting the hardest part) then please do direct her here too.

wishing you every strength for the upcoming weeks, you sound like an amazing mum xxxx

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Alliwantisaroomsomewhere · 25/08/2011 16:13

Yes, please do keep us updated. You are such a good support for her and it is lovely to hear about how much you love and care for her. I hope that somehow you are finding similar love and support for yourself because it cannot be easy for you either.

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Heliantha · 25/08/2011 21:11

Hello Crazycrew. My son has a hypoplastic left ventricle and has just got his first GCSE module results (Y10), including an A! We were told 15 years ago that the best option would be to terminate the pregnancy and that if we chose surgery his quality of life would be poor... He has a full, exciting, normal life and we have all learned as a family to live with the restrictions his condition brings, just like we would with any other challenge. It has not been easy, and the first months especially are hard, but I wanted you to know that it is not all darkness ahead. I'm glad you've been in touch with LHM - have you seen their antenatal pack? x

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CRAZYCREW · 28/08/2011 21:57

Hello there thanks so much for the reply... she has though ling and hard re the this baby and she said she is giving it every chance just likemher little boy... we know its serious and we know it will be hard but i will be there for her when she needs me. I wont take over as she likes her own space.

We met a boy in France at half term with this condion you know how very strange is that dont you agree? I ahve not maged to get an antenatal pack yet from them but will ring and ask for one. Hollie is going to Leeds on Tuesday for an amnio to outrule any further condiotons but think it will be okay as Harveys was. They think maybe it is genetic rather than diabeates related now but who knows..

Some days I wish it would be all unreal and she was carrying ahealthy baby but she is amazing and she will cop as she is unique and a credit to everybody. Her priorotes are her little boy not going out etc... we took the kids on Thomas yesterday at Embsay and they loved it1

Thanks so much for your message though. We treasue everyday and take a day at a time. I am going Tuesday to a tribunal for Harvey but doubt I will for DLA. He has his heart problems, bad reflus, sick nightly, constipation, etc... I am not very prepared to be honest but Hollie has so much more to do than a child without extra health issues etc.. it just seems so unfair when some people get it for the slightest thing. He also has astham and has medicine and inhalers for this... wish me luck!

Hope your young man does well.. what are his plans... mny eldest daughter has just come back from istanbul WHERE SHE HAS BEEN AN AUPAIR for the Summer and she is going to Uni on the 10th In London. Good luck and bet you are so proud of him!

Nicola