worried about an abortion

[mummo]

about 14 weeks pregnant. found out that the baby has a genetic defect. not severe,but would "stand out in a crowd".will also lead a life of pain and require multiple surgeries. have a beautiful and healthy 19 month old.hubbby and i both want to terminate, for all our sakes.am really worried about my feelings after. have any of you been through this and what was your reaction? lots of support from my husband whatever decision i make. seeing docs in genetics tomorrow who are trying to give me all the medical options that are present if we do go ahead.
help please!

So sorry you are in this position mummo - everyone will have an opinion but its only yours (and your families) that matters. You are the person who has lived their life with that condition and you are the closest to your family to know how they and you will cope. However it may be worth talking it through with someone as you you dont want to regret a decision that may be largely influenced by your treatment of other people when growing up. Hopefully the world is a bit more tolerant and perhaps there is more support available then when you were young.

I terminated at 21 weeks after diagnosis of a fatal genetic condition. If my son survived the rest of my pregnancy he would not have survived birth due to the severity. In many ways for me the decision was a little easier as I couldn't bear the thought of carrying him when he was potentially in pain (all his joints were fused together so he couldn't move) It broke my heart but it was the right thing for us to do. I really feel for you, and am so so sorry you are faced with dealing with this.

I got in touch with ARC when I was in your situation and they were very helpful. They found 2 people who could relate to my situation (the post mortem showed we had a 1 in 4 chance of this happening in any future pregnancy) and this was very helpful as they had been there...

Hello Mummo. I'm mostly just a lurker here, but I've been thinking about your thread since I read it earlier, so came back to write something similar to what I see wannaBe has now already said.

Sorry if this is a naive way of looking at it, but do you really wish that you had not been born? If you are glad to be alive, you can perhaps imagine how grateful your son might be to you in the future that you chose to give him life too "despite" his condition.

I bet you're a great mum and would be a wonderful role model to your son. And I'm sure the others are right that counselling would be a help.

Am wishing you well for your very hard decision.

Hi Mummo. I don't normally post on here - prefer just to lurk but felt I should post something.I am sorry that you are in such an awful situation. It is the hardest decision you will have to make and you really need to make sure you take your time - like the earlier poster Chooster said ARC are fantastic - they can give you lots of information and put you in touch with others who have been through the same thing. I had to make this decision last year when I was 21 weeks pregnant and they really helped me. To be honest I really didn't have a choice as my baby would not have survived but it was still such a hard decision to make. A termination at such a late stage was not easy - i had to go through labour and deliver my baby - not sure if this would be the same at 14 weeks - but it is hard to go through all that knowing you won't have your baby at the end of it. The guilt afterwards was enormous and it has taken me a long time to move on from the decision we made - I am now expecting a baby in 4 weeks time and think I have finally moved on.
Also I have a friend who had a baby with a cleft lip, she did not find out until her 20 week scan,she had the same when she was born and the thought of what her child would go through really upset her - it brought back memories and feelings from her own childhood that she had tried to bury and forget about and she felt guilty that she had passed it on to her baby.she disconnected from her pregnancy and her baby and said that had it been picked up at an earlier scan she would probably have had a termination - it was only when her baby was born that she realised that she loved him no matter what and that the cleft did not matter,she is now so pleased that she had not found out at the earlier scan. All her feelings of guilt have gone and she has a beautiful little boy.
Only you and your husband can make this decision - it is good to get advice from others but the decision has to be yours.
Good luck and know that there is always someone on here to talk to if you need to x

i have been sitting here almost transfixed by the messages coming in. my gut instinct still says to end the pregnancy. but going to go to the geneticists with an open mind. i am almost hoping there will be some miracle answer and solution. but thank you all. will post an update tomorrow.

I'm just wondering if people have missed the part about poor mummo's little boy being subjected to a life of PAIN? Yes, the disability part is relevant, but surely the fact that he will be in pain is far more relevant? I know many people that live with varying degrees of disability and would never dream of treating them differently. I have never been in the terrible situation that mummo and some of you others have been in and can honestly say I would not know what to do. But, it is NOT just about how he would look and whether he'd be bullied, if he is in pain, that is a terrible thing for mummo and her DH to subject him to. She would also have to live with that pain herself, knowing she could have prevented that. Please have some compassion for her. We cannot judge her for her decision.
Mummo, I hope that you can find some support for yourself and your DH and make the right decision.x

I have 2 dc's one has severe cp(so of course I echo NMC)
but my nt child. yes my nt child has had 10 operations, 4 not minor.
just wanted to point that out. disabled does not instantly mean pain.
as for bullying, my nt child has been bullied.
Ginge. I hope you keep those awfull opions to your self at work.

Ginge, you are seriously in the wrong job if you think those chidlren shouldn't have been born.

what a bloody difficult decision.this is a deeply personal choice.up to you.hopefully discussion and reflection will help you

this is your choice to make and you dont need to justify to anyone else

mummo, I can offer no advice, but you do have my very heartfelt sympathy. Sadly at the end of the day you have to make the final decision, but you must follow what is in your heart. There will be pain either way, and I hope whatever you decide you get the support that you need and deserve. Whichever choice you make, You have my admiration and I wish you all the best.

mummo - had to reply as I really feel for you. Having had one child myself with a 'structural defect' that was not picked up on scan, I do know how hard things can be. My son has no pain from his condition and it's not all lift threatening, nor does it cause him any mental problems, but he has to cope with the stares, the people asking him constantly and he goes to a mainstream school. To be honest though, he is a tough little nut because of it and he doesn't let it bother him, it's me who gets upset. i had no pre-natal tests with him because was my first and I Had no other children to have to consider. I knew I would take whatever was thrown at me.

But when I was pg the next time, I asked and asked again if there was a structural deficit. If it had been the same one then I could have coped, if it had been to a worse extent, then I really don't know what I would have done, but at least I would have been prepared before the birth.

Now I am pg again and much older, I have been for detailed scans, nuchal scans etc, to see for problems., Thankfully none have been picked up, but I did this because my DS1 needs me and he wouldn't get the full attention he needs if I had another SN to deal with., This was a personal choice. Obviously I will love my child regardless when he/she is born, but I think your decision is one only you can make. You have been through the same yourself and so no one understands as much as do you.

I wish you all the best x

quick update.
seen the geneticists and was told that the condition was not as bad as i first thought.infact the new baby might be less severly affected than my self. cant help feeling even more confused.

so can they say how the baby would be effected? would it just be a case of looking/being obviously different or would there be lots of operations etc involved throughout the child's lifetime?