just had a confirmation for downs syndrome

(78 Posts)
fire77 Wed 22-Aug-12 04:23:26

Dear all
i just wanted some advice or maybe just for someone to listen and not judge. Having been for a CVS after being given a greater then 1:2 odds for T21 i had this confirmed this afternoon. This is my first pregnancy and i am 34 (35 in dec). I feel numb and tortured because i know i am going to go ahead with a termination of a very much wanted child but only because i dont feel strong enough to cope with a child with downs syndrome. To say i feel wretched is an understatement. My thoughts flit from one minute thinking its the right thing to do to then thinking i have been blessed with a much wanted pregnancy only to terminate it because this baby isnt good enough. In my heart of hearts i know i am doing the right thing but i am struggling to cope. I feel at almost 35 i will be much older and the likelihood of having another child after this that is healthy and not affected with T21 is higher. I am also scared of going through a termination ( i am 14 weeks and thought the CVS was bad enough).
Please could anyone out there offer me any advice or comfort as i feel i have no one to talk to?

onemoreforgoodmeasure Wed 22-Aug-12 04:38:11

I didn't want to read and run as my heart goes out to you but I don't have any experience of this. I think I would make the same decision in your shoes, hopefully there will be someone on in the morning who can pick up your thread.

Fuchzia Wed 22-Aug-12 05:27:39

This must be terrible for you. I can't offer you any advice, just my best wishes.

ColouringIn Wed 22-Aug-12 06:52:50

Oh I am so sorry to read this.

Have you spoken to ARC (Antenatal Resukts and Choices) as I know they run a helpline service you could use. So many women have been through what you are going through now.

This is obviously a much wanted baby and only you can know if termination is right for you. If you were 24 it might be easier to think "I can continue with this pregnancy as I am young and can cope long term", as we get older that becomes less and less certain. I know that at 24 I would have continued with a pregnancy but that at 37 I would not have done because of the long term commitment and less certainty that I would be around or in good enough health to manage.

Has anyone spoken to you about the procedure?

I used to be a midwife and cared for several women in your situation but am aware that procedures change and it might be all different now so don't want to say anything about the process in case I am wrong.

All I can say is that you should be well supported and be given pain relief as needed. Look up ARC and see what they have to say.

I am so sorry you are having to go through this.

While I know I would make the same decision in your shoes it just isn't as easy to do is it. I'm so sorry this has happened for you. I really hope you go on to a lovely healthy pregnancy next time.

Good luck

ColouringIn Wed 22-Aug-12 06:58:10

And be clear, this is not about your muh wanted baby not being "good enough", this is about you looking at the future for this child and making a decision about whether that future is likely to be a happy or difficult one. In doing this you are taking into account everything including your age now.

And you would have to be very unlucky to conceive a second baby with T21, it is just unfortunate this time. Obviously as we get older the risk of T21 increases but the odds are still very much that any future baby WON'T have the same chromosomal anomaly.

Pizdets Wed 22-Aug-12 07:17:54

Hi fire,

So sorry to hear your news. It's the most awful shock and something which is so hard to get your head around.

Please feel free to come join us on the 'termination for medical reasons' thread and get some support there.

I terminated my first pregnancy last Thursday at 17+6 after 5 agonising weeks (placenta in wrong place for CVS, amnio rapid results came back clear nd we were told everything would probably be fine, then full results showed an extremely rare deletion). I called ARC and got some really great advice and support from them so second that.

I don't really know what to say or how to help, but there are others going through this and I do know exactly how you feel. If it's any help, this last week has been unbelievably tough but I so far I don't regret my decision.

There are also some wonderful ladies on here who have the benefit of a little time since they went through all this and hearing their experiences really help.

My heart goes out to you and I hope you can make a decision you're comfortable with. Do you have support from your dh and family? Another thing that comforted me was speaking to the genetic councellor about what most other people do in my situation, it made me feel more 'normal'. Having said that, if you search through on here you can find people who kept their babies after a t21 diagnosis and are very happy.

Sorry, bit of a rant and not sure I helped much. Fingers crossed for you that you find a decision you're at peace with. Come talk to us if you do decide to terminate and have any questions or want to rant.

Piz

mummytoh1 Wed 22-Aug-12 09:33:40

My heart really goes out to you. I had a 1:15 result in 2010 and had the outcome of the CVS been different, I would have been making the same heartbreaking choice as you. I also don't think it's that the 'baby isn't good enough', you are being very very hard on yourself, it's a far more complex decision that you are making. ((hugs))

I would also recommend Antenatal Results and Choices. They will be able to advise you on the termination side of things, and also hopefully help you emotionally.

My understanding is that your chance of a subsequent child having down syndrome will automatically be 1% for a future pregnancy. This is a very very small chance, and I'm aware of many stories of ladies in your position going on to have a chromosomally normal child afterwards.

Again, I really feel for you, and I'm sorry you are facing this. x

ajandjjmum Wed 22-Aug-12 09:36:36

Just to say how sad I feel for you having to make any decision - but you must do what you think is right for you. So sorry.

mrslurkalot Wed 22-Aug-12 09:46:59

I am so, so sorry that you are going through this. Like mummytoh1 I had a very high risk of both Downs and Edwards in my second pregnancy, and if the results were different I would have been faced with your impossibly hard decision.

I can't recommend ARC www.arc-uk.org highly enough. I found them to be extremely supportive, and they will be able to talk you through all your fears, and support you afterwards.

Please, please be kind to yourself xxx

katiecubs Wed 22-Aug-12 09:49:34

I'm so sorry you are having to go though this - have been through the same myself albeit with a differant chromosomal diagnosis.

You need to do what feels right for you, no one else. I just wanted to add that 91% of people with a downs diagnosis decide to terminate so if you go down that route you would be with the majority.

Having said that if you are unsure like Pizdets says have a search for people who have decided to continue with their pregnancies who may be able to advise and help you on the realities of bringing up a child with Downs. I'm sure there is a lady freshfruitsalad too who is in a similar position to yourself who is continuing on with her pregnancy - she might be able to help too.

Good luck with whatever you decide xx

KateSpade Wed 22-Aug-12 09:51:40

Message withdrawn at poster's request.

DuelingFanjo Wed 22-Aug-12 09:58:06

Katespade, this is really not the place for you to make comments like that, they are not helpful and this area is supposed to be a supportive one for people making difficult choices.
I am going to report your post to Mumsnet HQ and hopefully they will delete it and then this response.

KateSpade Wed 22-Aug-12 10:08:38

Message withdrawn at poster's request.

I have reported the post. This is an amazingly difficult and heartbreaking situation for the op and comments like that are clearly not helpful.

Please try and consider the whole picture before you post.

Op, I feel heart sorry for you.
I had a termination at 18 weeks, due to anencephaly. It was many years ago but it was a horrible thing to have to go through. There are lots of helpful people here, and good advice on who to talk to. I wish you all the best xx

missymoomoomee Wed 22-Aug-12 10:12:37

Kate how disgusting of you to say such a thing. Why say anything at all if you aren't going to be supportive. OP I knew before my last 2 pregnancies that I may have had to terminate due to a genetic illness, I was very fortunate I didn't have to but my heart absolutely goes out to you. I don't have any real advice to offer just my sympathies for having this horrible choice to make xx

kate I think you should read and consider the opening post before you reply again.

Pizdets Wed 22-Aug-12 10:23:51

katespade I have also reported your post. The OP has a tough decision to make and judgements like that are not helpful. Often people in this position don't just have to consider whether their child will be a 'pleasure to be around' but also to think about the quality of life for their child (ds is often associated with other severe heart and health problems), how it will affect their current and future family and also what will happen to a disabled adult when they (the parents) become old, infirm and unable to provide a high level of support. Please believe me when I say no one I've met or heard from in this position has undertaken the decision lightly, and most of the parents who kept their t21 babies are kind-hearted and supportive people who understand the trauma and upset of being in a position like this and would never rush to cast judgement on anyone else.

mummytoh1 Wed 22-Aug-12 10:37:48

I've reported katespade too, what a nasty thing to say, totally inappropriate.

KateSpade Wed 22-Aug-12 10:44:11

I know I shouldn't have said anything & i am sorry for the harsh words earlier. It is an emotive situation for me that's quite close to my heart. I know not only the Heath problems associated but to have a member of my family have the condition + other people I know. & while I don't agree with your decision I am truly sorry for what your going through & I hope everything works out in the end for you.

Northernlurkerisonholiday Wed 22-Aug-12 10:54:27

It's a pretty emotive situation for the OP too as I'm sure you now know. Maybe restrain yourself from posting next time?

realnappiesmum Wed 22-Aug-12 11:57:40

Hi just read this thread and what katiecubs and pizdets said about other women who have had prenatal diagnosis of down's and are continuing with pregnancy. We had 20 week scan which showed soft markers for down's which was then confirmed with amnio. We decided to continue with pregnancy and I am now 26+6 week. I think I am right in saying that wipsglitter and Eidsvold have children with down's syndrome if you want to search for them. Freshfruitsalad also like myself had prenatal diagnosis of down's and is continuing. I know this is a deeply emotive subject and a very very personal choice and no one should ever be judged on choice they make after receiving this news. From conversation with our consultant, things have improved dramatically over the years for children and adults with down's syndrome and many are able to lead independent lives. Age did not come into it when we made our decision to continue as I am 37 and my husband is 49. My heart goes out to you at this difficult time as I fully understand how it feels to receive this news.

fire77 Wed 22-Aug-12 13:37:58

I am so overwhelmed by the lovely messages of support I have been given just in the short time since I have posted. Thank you all for each and every kind non judgemental message I have been given. I understand that not everyone will agree with what I have said. Its a very sensitive and highly emotional situation to be in and naively I thought I would sail through with no problems. No one deserves to be going through this no matter what they may have done and I wouldn't wish this on my worst enemy.
Unfortunately the situation to me keeping my baby has been made more complicated by being told today that there appears to be a trisomy on chromosome 13 which is patau's syndrome so my babies quality of life would be compromised further. I couldn't do it to my little boy (they kindly told me it was a boy today) as I feel it is worse to possibly have to watch him go through pain or die before his first birthday. Please forgive me if I sound self indulgent as that really isn't the case as I love him so much and it is killing me to have to let him go. The hospital are arranging a surgical termination even though I will be 15 weeks by the time its done. I must say I am relieved. Although I love my baby I am scared to go through this again and put another little life at risk but I suppose genetic councilling will help.
Thank you all so much for listening to me in my time of need. I am so sorry to hear others have been through this and those that are telling their stories and being so strong well all I can say is you are an inspiration to me. I am so sorry for everyone that has been through this and I feel your pain. I am glad I am not alone and I can turn to you all for support. it is from this I will find the strength to go on.
Love to you all x

kilmuir Wed 22-Aug-12 13:44:54

op I hope you find the strength you need to get you through this awful time

ColouringIn Wed 22-Aug-12 13:46:37

You are not being self indulgent, you are making a very difficult decision based upon the quality of life your baby will have.

I hope everything goes as easily as possible for you.

Be kind to yourself (and your DH).
Allow yourselves time to grieve
Xxxx

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