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?

fire I just wanted to say how sorry I am that you are going through this.

Trifle Wed 22-Aug-12 19:05:04

I fully support your decision and totally understand where you are coming from. I think you are making a very selfless decision. I dont have a child with Downs but had an amnio with both pregnancies and would have made the same decision as you.

I recently met a lady with a child with Downs. I thought she was amazingly strong and composed considering the child was also deaf. I was completely surprised when she broke down in tears and said she wished she could turn the clock back, that if she had known she would never have progressed with the pregnancy but of course, it's too late. Such honesty was a shock, the reality of dealing with a child with so many difficulties was overwhelming for her.

LookBehindYou Wed 22-Aug-12 19:10:50

I'm so sorry fire77. My thoughts are with you and your little son. So sad.

PrettyFlyForAWifi Wed 22-Aug-12 19:11:11

I'm so sorry that you have found yourself here Fire. I have walked along the same path as you (terminated at 22 weeks for cardiac problems) so I understand the anguish you feel now. There is a support forum at ARC which is a safe space for women who have had to interrupt their pregnancies, it is very supportive and there is obviously no risk of fuckwits who don't know what the hell they're talking about weighing in with their hurtful and irrelevant opinions. Sending much love your way for you and your little boy x x x

katiecubs Wed 22-Aug-12 19:25:53

Fire - sorry to hear you have had more bad news, but glad you have found it a little easier to make the decision. Will be thinking of you and your family, take care x

drjohnsonscat Wed 22-Aug-12 19:41:28

Fire I just wanted to post to say that I terminated at 16 weeks for the same reason. For me it wasn't even a 'decision'. It felt utterly clear to me and I didn't have to wrestle with my feelings over it. I just wanted to say that as I think sometimes we feel as though we don't have permission to be ok with our choice.

That's not to say I didn't feel desolate and despairing. I was the same age as you and felt I was blighted (I had Lready had 3 mcs). But I was wrong. My daughter was born less than a year later and I had my son at 40. My life has found its path and yours will too.

Wishing you courage.

fire77 Wed 22-Aug-12 20:32:48

I must say I feel so protected by you all. You have never met me yet are understanding the pain I feel and are so non judgemental.
Trifle what you said about meeting that mother who was honest enough to say she would do what I feel I have to if she could turn the clock back doesn't make me feel like such a monster and this is from a lady that loves her child very much.
Dr johnsoncat I am so sorry for the pain you have gone through. Reading what you went through made me feel so humbled but you have given me hope that I so badly wanted so thank you and I am so happy to hear you were finally blessed with happiness through your children. Strong women like you give me strength and I am in awe of how you continue fighting with such dignity.
Prettyfly I hope you are healing now what a horribly late stage to discover your baby is so ill. You are right people who are judgemental do not deserve our acknowledgment so I have tried to ignore any posts about how awful a person I am as I don't need it right now nor did I ask for it. Don't get me wrong it hurt to read but I guess I have to accept that my decision will anger a lot of people I just wish they chose another forum to vent their frustration about 'people like me'.I just consider myself a woman desperate to be a mother but selflessly protect my baby from any harm or pain and if that means letting him sleep as much as as I love him then that's the sacrifice I am willing to make even though this pain will live with me until I die.
Thank you all again so much for understanding and offering such amazing words of support in my desperate time of need. You have all restored my faith in the human race.
Hugs to all of you who have been through or are going through pain of any sort. My thoughts are with you all too x

drjohnsonscat Wed 22-Aug-12 21:38:03

Fire I'm glad some of this resonated. And glad you feel protected. Whatever you feel or want to say is ok. All I will say is that this terrible time for me is truly behind me now. It was so painful to go through but I had a future and you do too.

Thinking of you over the next few days x

KateSpade Wed 22-Aug-12 21:52:07

I really am sorry, i shouldn't judge anyone else's situation at all. No-one knows what anyone else is going through. I sound like an ass, but i am a nice, reasonable person usually.

My family member died a few years ago and I've recently found lots of his baby books with his name in, thats why i just went off on one.

No excuse though. sorry.

littleanimal Wed 22-Aug-12 22:40:38

I'm very sorry that you are going through this. Everyone will have different opinions on this, but I wanted to share my experience. I am 34 and my 31 year old brother has Down's syndrome. He is a lovely guy and has a very good quality of life. However my mum (who is 66) essentially still has to look after a child - he is totally dependent on her. She has to wash him, dress him, prepare his food etc. She has to get a babysitter if she goes out in the evening. As much as I love my brother, I don't think I could give up my life like she has. I think that given a choice, I would not continue with a Down's pregnancy. But obviously this is a deeply personal decision.

Yourefired Wed 22-Aug-12 22:50:02

No judgement here. You and your partner need to do what you feel is right for you. Sounds like you are informed of the implications and facts, and others have suggested places where more of this type of support available. Go easy on yourself, life is very hard sometimes.

yellowraincoat Wed 22-Aug-12 23:02:19

OP, I'm so sorry to read this. Absolutely no judgement from me and I hope you continue to get the support you need.

chipmonkey Thu 23-Aug-12 00:20:08

OP, so very sorry that this has happened to you. and with Patau's tbh it's basically not a decision to end the life of the baby, it's actually doing the kinder thing for the baby by ending his life before he has to face a world of discomfort and pain and then sadly die anyway. You did the right thing for your boy.

Kate I know you just blurted out what was in your head at the time and I have done the same, many a time on MN and regretted it so you're not alone in that!

There are lots of women on MN who have had a baby with DS and who love their children very much. And I have a cousin with a beautiful boy with DS. He is the light of her life. But he spent the first three years of his life in hospital, has had numerous heart operations, has never eaten any food orally, so has a tube inserted into his tummy in order to feed. She adores him and I honestly don't think SHE would make a different decision now if faced with the same choice again, nor would anyone in our family wish she had chosen differently but the sacrifices she has had to make have been huge. You honestly can't berate someone for making that choice as sadly, it isn't always just a case of being a lovely child with DS, they all are, but for all you know, they may be facing the same life as my cousin and I wouldn't blame anyone one whit if they thought that might be too much for them. My cousin is a wonderful devoted Mum but she has had very, very bad days with her boy.

I have an aunt also who lost her son aged 5 from complications from heart surgery which sadly a lot of children with DS will need. I have also lost a child and the pain of that is something I wouldn't wish on anyone. If you have a child with DS, you are much more likely to have that child die before you than if your child didn't have DS. Do you see that it's not as simple as you originally thought? And that it MUST be the choice of the couple or indeed the woman who is pregnant herself to make the choice about what she can and cannot take in her life?

I do think you sound like a lovely person and your recogniition that people with DS are human beings and deserving of love and respect is commendable but the Antenatal Tests/Choices topic can be an awful place for an OP to find themselves posting in so it's best to be mindful of that.

Fire77 I just wanted to say how sorry I am, and that I'm thinking of you. This is a horrible situation to have to go through, but the diagnosis of DS plus the added complications have, I think, made the decision for you.

I'm 35, have two children already (4yo, 8mo) and sadly had a TFMR last week at 18 weeks because of a diagnosis of DS after an initial risk factor of 1:2. It was a horrible decision to make, and one that I never thought I'd make if you'd have asked me hypothetically before this whole situation arose. But that's by the by. I would never judge anyone's decision. Everyone is different, and there are so many factors involved.

If you have any questions about what's going to happen, or simply need your hand held, don't hesitate to ask/talk about it. There are lots of lovely people here who have helped me over the last few weeks. It's so nice to know you're not alone, that others have been through what you're going through, and that there is - eventually - light at the end of the tunnel.

Thinking of you x

fire77 Thu 23-Aug-12 06:30:51

Drjohnsonscat i am going to hold onto your story and keep the hope that i still have a future and that hopefully i will go on to have another child god willing that is healthy so thankyou.
katespade thank you for your apology and i understand your judgement and that it wasnt meant with malicious intent. Sometimes it can be hard to put yourself in someone elses shoes unless you have been through it yourself no matter how strong your feelings are on a subject. You were at least gracious enough to see that in the end
littleanimal your story of your aunt is exactly what i didnt want and why because of my age and my understanding of my limitations is why i have decided not to continue with my pregnancy but its hard for people to accept that as a reason labelling the decision to terminate as selfish when its based on so much more than that so i take comfort that am not alone in feeling this.
chipmonkey thankyou for sharing your stories from your family of both sides, one of a parent with a child with DS who wouldnt change a thing and one that is my worst fear which would be to see my child in pain/suffering or worst still die before you. The problem i have is that Dr's cannot predict the severity of DS my child would get and i have to face the worse case scenario in my head not as a means of rationalising my decision but as a means of being realistic. This would not just impact on me but also my husband and my family and the thought of who would look after my boy if i or my husband died before him which is a very realistic concern due to my age just breaks my heart.
mummymonkey your story is heartbreakingly similar to mine. With the 1:2 odds i spent days scouring the internet for happy endings to such rubbish odds and desperately clung to those and ignored all the sad endings. I thought there is still a 50% chance he will be ok and prayed i wouldnt be the '1'. Looking back i think the shock and the denial that i would ever have to face a decision like i have was too much at the time. I am so glad you have 2 other children to help focus your mind. I hope one day i will be so blessed also. I take sanctity in knowing there will be light at the end of the tunnel and will take comfort from that and the fact that everyone on here have been so lovely with their words of comfort in such a dark time for me.
thankyou all who have stopped to read my situation and took the effort to send kind words to me. I know you didnt have to and the fact that there are such wonderful people out there gives me great comfort. x

Champneys Thu 23-Aug-12 06:39:39

OP - I am so sorry you are going through this nightmare. I really am and hope that you manage to get through it xxx

maples Thu 23-Aug-12 07:01:18

Dearest fire, I am so sorry to hear about your bad news of two genetic anomalies and the very difficult decision you have had to make.

I just wanted to post to let you know about the physical aspects. I had a missed mc but the pregnancy kept growing even though the baby had died. I had to have the surgical procedure at 13.5 weeks and was told then it was identical to the termination procedure. Physically I recovered very quickly. I was exactly the same age as you and was told by the Gynae that it is much easier to get pg after a first conception. I conceived again within 6 months and had DS.

Have the hospital told you why you need to wait to 15 weeks? Would there be a chance of an earlier procedure at another local hospital? I ask because I was also told I had to wait to 15 weeks but then switched to another hospital and got the op sooner.

Un MN hugs to you.

xx

fire77 Thu 23-Aug-12 07:56:20

champneys thank you i hope so too
maples i was 14 weeks and 2 days when i saw them yesterday. They initially said i had to have a medical termination as i was too far gone but after speaking to one of the top consultants he said he would agree to a surgical termination (which i was so relieved about as i have never experienced labour and didnt want the first time to be under these circumstances) but he cant do it until next week so i will be 15 weeks. I was assured that this surgeon is very experienced so the longterm risks to my cervix or future pregnancies is minimum or the doctor wouldnt have agreed to do it.
I am glad to hear it is easier to conceive after a first conception. I will wait to get the report from the genetic councillors in 6-8 weeks and if i am lucky enough to be told i or my OH are not carriers for any genetic conditions then i will try again as soon as my body will allow. I am sorry for what you went through but so happy to hear of your happy ending!

Fire77 - it sounds as if you haven't had a chance to have a proper chat with the medics. It is very unlikely that your baby would have both trisomy 21 and trisomy 13, I don't think the foetus would survive. (not impossible i guess but very unlikely). It seems most likely that the screening picked up an issue which has now been confirmed as trisomy 13.

Trisomy 13 and 21 are very very different. I really think for your own sake it would be worth getting someone to explain the results to you. I say this because, whilst it's no-one else's business, people who might find the idea of termination for trisomy 21 difficult for themselves would often terminate for trisomy 13 where the chance of survival is so low and the associated disabilities so severe. Although not strictly accurate trisomy 13 is often described as incompatible with life and so is often seen as a situation where there isn't really a choice. In other words if your baby has trisomy 13 you are likely to get universal support. It may be more helpful to you to feel as if there is no choice as well

Good luck.

Whoops only saw the first page - so suggestions a bit tardy. Anyhow good luck.

JaffaSnaffle Thu 23-Aug-12 08:37:47

Fire, I am so sorry you are going through this. I am pregnant now, and at 13 weeks I was told I had 1 in 20 chance of Downs. We decided to have Cvs and it came back clear. That week was one of the darkest in my whole life. The choices you are making are so very tough and very sad. I was completely conflicted over what to do with a Downs diagnosis, because I knew that some people with Downs live good lives, (but some have severe health problems). But Patau makes things very clear IMO. I am so sorry you have to go through this, it is so hard. I never thought it would be me that had to get into all of this, and I am very aware that I only had to go through it for a week. Try and get as much support as you can and be very gentle on yourself afterwards.

maples Thu 23-Aug-12 09:27:14

Fire that sounds very good - my op was also done by a senior consultant and I am sure it was one of the reasons that the physical recovery was so smooth.

drjohnsonscat Thu 23-Aug-12 10:50:50

fire you do not have to labour. I didn't - at 16+ weeks. I went to Marie Stopes and it was as ok as these things ever could be. My GP initially told me I would have to labour and that was almost the worst thing about it - the idea of going through labour at such a time. It was rubbish and I feel quite angry that I wasn't given all the options.

NattyCraig Thu 23-Aug-12 15:59:45

I think I would do the same thing as you, as much as you may want to be a mother if you know you would struggle to cope and therefore the happiness of yourself and child would be compromised then do whats right for you.

Good luck and good luck for the future

xxxx

Secondsop Fri 24-Aug-12 23:17:27

Fire77 I don't have any insight or experience to bring but I just wanted to say that my heart goes out to you at what must be such a hard time. It sounds to me that you are being incredibly brave and I really do wish you all the best.

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