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Iona test high risk t21

(11 Posts)
Gurraun Fri 27-Jan-17 05:08:57

Hi ladies

I am not sure why I'm writing this but I know many of you have been here though right now it feels like I'm the only one in the world.

I'm 39 and 12 weeks with a longed for no3, following a mc in the summer. I talked dh into a 3rd (we already have 2 gorgeous ds who are 7 and 3) and secretly I was hoping for a dd (although another ds would be lovely).

I understand the increased risk that come with age so opted for a nipt but really in a million years I never believed I'd be the person with a high risk result.

I am now booked in for a cvs on Monday but I know in reality that will simply confirm as the clinical results show the test to so accurate.

It is breaking my heart but I know a tmfr will be the right thing for my family- please don't judge me and I understand that children with DS are wonderful but it is a different life and not one I feel we could cope with or that I want my boys to have to cope with, especially given that we are not young parents so in time the responsibility for their sibling would fall to them.

I just feel that I pushed my luck going for a 3rd when I had so much already and now I have my come uppence and feel so stupid that having a girl felt important.My future now is not what I thought it was going to be and right now I am not sure how to bear that. I couldn't put dh (and probably myself) through trying again and now i have to live with the grief and let's face it guilt of not having this baby (because I could but really just to selfish to) and come to terms that my desire for another child is not going to happen.

Sorry for the rambling but I've not been able to sleep and just feel I don't have the strength to face the coming weeks/months/years. I'm very lucky, I have a lot and wonderful support from family and good friends but I feel so alone.

People who have been through this does it get any better- particularly if you don't have another child (lots of threads I have read talk of being healed by a subsequent baby) and did counselling help?

Chrisinthemorning Fri 27-Jan-17 06:08:57

I'm sorry you are going through this, it's a horrible time.
We had a tfmr for t21 back in 2011. We have had a healthy son since but he is our first and only child.
I found ARC - antenatal results and choices charity- to be a big help.

Gurraun Fri 27-Jan-17 07:17:28

Thank you. I literally can't stop crying - my eyes are leaking. Sorry that you went through this too but glad you have your ds - I need to focus on mine and how lucky I am to have them.

I will look at ARC but they won't allow you to join until it is all over.

Chrisinthemorning Fri 27-Jan-17 07:32:13

I didn't know that. I spoke to them on the phone, only used to forum afterwards. I would give them a ring today as the helpline is office hours only unfortunately.

zambean Fri 27-Jan-17 12:01:29

It's not selfish to decide not to bring a child into the world whose existence you know will be more difficult than that of most people, and who you can't guarantee to always be around to care for.

I would terminate if I got a t21 diagnosis, for many reasons. Some of them to do with my own interests and feelings - I don't want to be a carer for a disabled child for the rest of my life, if I can choose not to be. But also because I have no reason to confident that in 40 or 50 years time when I am no longer here, there will be any decent social care system left to care for that child. You also have to think about your other children - do you want to sign them up for a future of caring for their sibling, after you have gone, and without their consent?

You have nothing to feel guilty about, nothing. It is a desperately sad situation, and you are right to grieve and to mourn and to cry for as long as you need to. But you do not need to berate yourself or feel guilty about this decision. You are making the right choice for you, your unborn child, and your family. You have been put in a horribly difficult situation, where every choice seems dark and frightening, and you are making the best decision for you and your family.

Gurraun Fri 27-Jan-17 14:42:01

Thank you for your kind words Zambean. It is what I would say to someone in my shoes but it is hard to hold on to right now

zambean Fri 27-Jan-17 18:15:15

Yes, keep that in mind. Talk to yourself the way you would talk to a friend. Keep asking yourself what you would tell a friend in your position. You are bereft and grief-stricken right now and so are not able to be as rational and objective about it for your own situation, but you would tell a friend to forgive herself, to stop blaming herself, and to take care of herself.

For this reason, you should talk to a friend, or if not, to ARC. They are exceptionally kind and compassionate and non-judgmental.

Frantic7 Sat 28-Jan-17 18:22:15

Hi all, this thread has made me sad. I have 5 lovely kids, the youngest has Downs. If I'd know this when I was pregnant perhaps I'd have felt like you all do, that this is a tragedy and a different life and that it wasn't for me. But the reality is very different. She's 20 now and has brought more joy to us all than I ever imagined. I too envisaged a life time of caring but that is not the case. My girl also has ASD and faces many challenges but she is the absolute best fun, is away at College and has plans for her life, she has a boyfriend and a good time. She has many many disabilities but loves life. Her siblings would not choose any different life and are truly better people for their involvement with her, and above all they love one another and her totally. They are kind, compassionate and totally non judgemental. Yes she is often hard work, but if I've learn anything in life it is that there are no guarantees with any child but as an older Dad in our group said recently (he's 88 and his daughter is 50) he disagrees with the NIPT and wants everyone to know that if you have a child with T21 you will never have a criminal, you will never have someone who will hurt others, you will never have a drug addict or an alcoholic and you will always have love. I know my girl is 20 and she's lucky to have 4 older siblings who will always make sure she's ok and to be honest it's easy to do because if she's not happy with things everyone knows about it! She has brought the most unexpected joy to all our lives and I never think about her or her friends without smiling.

Gurraun Sat 28-Jan-17 19:00:04

Frantic7 - I am sorry I did not mean to cause offence. I fully understand that a child with Down's syndrome is a loved child who brings much joy. If I had not known (and maybe it is wrong to find out) we would of course get on with it and experience many wonderful things I am sure. However it is different because we know and do have a choice however hideous that is to make - if someone could guarantee that the baby would not have serious heart and other health issues and could live as full a life as your daughter my decision may be different but unfortunately that is not something that can be predicted in advance.

I am sorry if my post offends people - I truly understand there are different views - I guess I only saw my post from my perspective and was looking for support from people who had made the same decision.

Frantic7 Sat 28-Jan-17 19:33:11

Ahh Garraun, you didn't offend me at all. And I don't mean to upset or offend anyone either. Our daughter has indeed had serious medical issues, she had heart surgery at 8 weeks and is still seen regularly by a cardiologist, she has an auto-immune condition, perthes disease in her hips and a lower immune system certainly when she was younger. However I can hand on heart say this has not caused her the 'suffering' that people perceive it does. She still lives a full happy life within her potential. She will never live independently as she's too vulnerable but she can still have a happy fulfilling life. I suppose all I was trying to say is that it is not necessarily a tragedy to have a baby with DS which is quite definitely what the medical professionals think. The medical model of DS is so very negative with pressure put on parents to terminate as soon as they receive diagnosis yet the social model is very different. Families continually talk of pride and joy and most of all of love. I think fear plays such a big part in decisions not to continue pregnancies, fear that social care systems cannot support, fear that one will be unable to cope. That's why I am glad I didn't know because I truly don't know what decisions I would have made and I can't imagine now what my well planned out life (at that time) even was. The very best of luck to you and I hope life is kind to you.

Gurraun Sat 28-Jan-17 20:03:18

Thank you Frantic - appreciated

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