Worse time of our lives - unsure how to cope

[coco19]

I'm new to this site, and unfortunately have had some devastating news about my pregnancy, and needed to talk about this.

I am pregnant for the first time, currently about 16 weeks. Although I was expecting a slightly increased risk due to my age, we were shocked when my 12 week nucal scan and blood results came back with a 1:6 chance of Down's. But after having waited a week for a CVS, we were delighted, relieved, ecstatic to get the all clear two days later. We were told that the full (karyotype) results would be in 10 days, and I honestly believed that I had got over the worst already. Almost 3 weeks later we recieved the devastating news that there was a very rare chromosomal abnormality. We have made the very painful decision not to continue with the pregnancy due to the implications, but are told that there is a chance that this is inherited, meaning that there would be a 50/50 chance of this happening again. We have yet another week to wait while both DH and I are tested and I'm veering between panic and utter despair, and unsure what to do and how to cope with more bad news and whether its better to know or not. I am absolutely pertified with the prospect that would happen again and again and that we might not be able to have a family. I think I am in shock and am in a complete daze. DH is looking for answers to why this has happened, when we really know there aren't any. My DH has a healthy son from a previous relationship, so I feel like such a failure and that this is my fault.

Thank you for reading my post - I know there are no easy answers here, but I needed to get some of these feelings out. Any help or advice would be so welcome at this terrible time for us.

This must be absolutely devastating for you. I'm not sure what advice I can give you but bumping this post for you as there are people on here who sadly will have had similar experiences and hopefully can help you.

I know one thing though, you're not a failure and it's not your fault. Even if the abnormal gene comes from your side of the family, you're just one link in a long chain of people. Please don't shoulder the blame yourself, and please don't let this tragedy drive you and your partner apart.

Coco, I am so so sorry. I decided to terminate my first pregnancy in February this year, at 22 weeks, as my baby was very poorly (severe brain abnormalities). I know very well the rage, the disbelief, the awful pain of it all. The support thread in here pulled me through and still does in my darkest moments.

I don't really know what advice to give you, and I'm not sure I can find helpful words. Do I read your post the right way, that you have decided to terminate after you find out if the problem is inherited or not? If I have misunderstood, I apologise.

We were told that the abnormalities our daughter had were not inherited, so I don't know what to advise, but I agree that ARC are great, they will surely know of many similar cases. The uncertainty is awful and all I can say now is that you have to go through the days one at a time, hour by hour, there is no other way. Don't hesitate to post in here, the ladies on this board are very supportive and will doubtlessly offer a shoulder to cry on.

And please don't say that you are a failure. This is a "normal" feeling in these awful circumstances, when you can't really find a cause the easiest thing is to blame yourself. If the worst is confirmed and this is inherited (although I really hope this will not be the case), there is nothing you could have ever done to prevent it.

My heart goes out to you coco and I really wish I could find better words. Please just don't feel alone, there are so many women who have had similar horrible experiences and who understand, so just come in here and shout if you feel this relieves your pain just a little bit, and we will try to hold your hand. xxxx

What Riven said.

Sometimes tests are a bad idea and sometimes they aren't accurate.

Coco, I've just re-read my post and just want to clarify that in no way am I trying to steer you towards termination, if you are waiting for further results before making a decision. As I said, if I misunderstood you initial post, I apologise. Our decision was based on our own circumstances and the diagnosis we were given, and far from me the thought that this is the "right way". What I wanted to say is that no matter what the outcome will be for you, there will be someone here who will understand and hold your hand. These are awful times for you and you need all the support you can get.

Coffee, I think Coco means they have decided to terminate this pregnancy because there is a confirmed chromosomal abnormality. The tests are to establish whether there is a genetic link, which will affect her decision on whether to try for future conception the traditional way or with medical help.

Either way that poor couple are going through hell at the moment and I hope Mumsnetters and ARC can help them get through it.

Dear Coffeeandchocolate,
Thank you so much for your kind words - I didn't read your message like that at all, but I just appreciate you sharing your story with me. I'm so sorry that you have gone through such a difficult time too, and hope you are coping. We have made the decision not to continue with the pregnancy whatever the outcome of these further tests, but we need a few days to get our heads around this. Your words do help - I have been living hour-by-hour, trying to fill my time up until I wear myself out so I can sleep which I guess is how we'll have to cope for a while.
Thanks again for your support x

Cuppa, that was my understanding as well when I wrote my first post, but then I feared I might have been wrong.

Coco, thinking of you tonight.

Cross-posted with you Coco. I am coping, thank you, I have many bad days but also good ones now, and as I said one of the threads in here, the support thread for women who have chosen to terminate, has been a lifeline to me. If you want and feel like it, you can join us anytime - we have all faced this terrible choice unfortunately and are now in different stages.

Also, if you have any "practical" questions don't hesitate to ask. I hope you are also getting some support in real life.

Hello Coco - I am so very sorry that you have been dealt this devastating blow. Please be assured that there are many, many women here who have experienced similar and who are here to give you whatever support and comfort you might need. There are no judgements here - just a network of help and understanding.

I really feel for you. I've had three CVS procedures. Two had poor outcomes but the third saw us getting a good initial result and I recall so vividly the high that you feel when you think that all might just work out. For you to have experienced that joy, followed by such despair is so cruel, so unfair.

Please know that I am thinking of you tonight. I had further testing, along with my DH. All came back totally normal, but a jittery time for us both. I needed to know. And it helped to move me on.

You will follow your own path but we'll be here along the way, if we can help. And again, I'm so sorry.

sorry for what you are going through

I have a balanced chromo translocation (the 50/50 passing on rare chance of rare chromo disorder)

If it does turn out that one of you is a carrier, it really isn't the end of yr chances of having a baby. Aye it sucks big time but there is hope. Am happy to help / chat more if you wish

I have a dd with ubt (rare chromo disorders. I found out about all this after her birth), a ds with normal chromosomes and am pg again with baby with normal chromosomes

wishing you all the best

I haven't read the other posts. I don't know what others are saying.

I turned down any kind of test because I knew I could not get rid of the baby I had longed for no matter what happened. If she had problems.....I wouldn't have cared. I would love her NO MATTER WHAT. Can you???

What if they are wrong??

What ever you decide my thoughts are totally with you guys. All the love and God bless.

Supergreen - trying to think how to say this with sensitivity but am tired, so please forgive me if this comes out wrong. Sometimes the abnormalities we learn about through testing mean that our babies will have short lives of suffering - and by which I don't just mean they might have a learning difficulty. To say that 'if your baby had problems you wouldn't have cared... and would love her no matter what' does imply that those NOT continuing a pregnancy don't love their child. But this is not the case. There are women who have posted here who carry great sadness because they did choose to end a pregnancy BUT who did it for the sake of their child, for various reasons.

I lost a baby to T13 last summer. We took two incredibly difficult weeks to come to a decision; she had holoprosencephaly and enlarged kidneys which showed at the 13wk scan and I, along with many others on here, did consider all options. Looking at the stories of others was heartbreaking, trying to make a decision was heartbreaking, but we did not want her life to be one of short suffocation. Sadly, she died anyway by 16wks. I do know that some parents in similar circumstances would choose to continue the pregnancy but I just want to be clear that by ending a pregnancy it does not mean the baby is not loved.

I don't believe you mean to cause any further sadness or heartbreak to this couple BUT they will have had the most horrible time since their initial 'good news' was swept away, and no-one in this situation loves the child they are carrying in any the less throughout that time. It IS heartbreaking.

Dear coco - my thoughts are with you. xx

If that was your interpretation from what I said I am sorry but that was not what I meant at all.

Even on sensative topics like this why do people have to start a bun fight.

coco19 I am really touched by your story and know that your decision to not continue with the pregnancy must have been one of the hardest decisions of your life. I apologise if I have in any way upset you. Much love.

Please don't feel like it's your fault. Probably all of us are carrying at least one unpleasant genetic abnormality that our kids could manifest, but only some of us are unlucky enough to find out what it is.

Dearest Coco
I am sending you much strength and love; how devastating for you.
Try and get through each second, each minute, each hour. You are in shock and it hurts alot. There are women on
support thread for women who have chosen to terminate who will hold your hand in your hour of need. They will not judge you, or try and sway you. They will listen.
With much love
Busier Bee
xxx

Hi Coco, thinking of you and your dh. I wanted to say "I hope you are ok", but what does ok mean now? I just hope you are holding onto whatever comforts you now, even if just for a little bit, and getting through the hours one by one. xxxx

Coco, I am so sorry too. My heart goes out to you. I have been through this twice: at 13 weeks and at 20 weeks, with different fatal conditions, and also chose to end the pregnancies at those stages. It was impossibly hard as you know.

I am here if you have any practical questions about the termination itself, or anything else, or just to hold your hand. Be kind to yourselves and I hope the genetic testing comes back clear. Good luck.

Thank you all for your words - it means so much read your messages of support and know that there are people I can talk to. x

Hello Coco
Just sat here thinking of what you and your husband are enduring right now. It must feel so hellish for you both. I too have terminated two pregnancies; it has been a hard and agonising journey.
You will get through it, although you may not be able to see how at the moment. Take comfort in each other if you can and be gentle and small and do not expect too much from yourself.
Sending you gentle hugs
Bee xxx

Hi Coco

I am thinking of you during this waiting period and sending lots of best wishes, stregnth and hugs. I ended a pregnancy 6 weeks ago due to chromosome abnormalities and know the confusion, bewilderment, heart break and real pain that you must be going through. To have it be a rare abnormality not picked up by the fast results and to have your joy and relief crushed seems particularly cruel so my heart really does go out to you.

I don't want to jump the gun in terms of talking about the reasons for the abnormality but I do want to let you know that should it come to it there is something called preimplantation genetic diagnosis(PGD). Essentially this is a version of IVF when they screen the embryo for chromosome abnormalities before implantation. I only mention it as you say you are terrified that if it is an inherited condition it could happen again and again so just wanted to say that there are options for you in the future whatever the results of your testing are.

So much love and best wishes, be kind to yourself xx

Thanks Scrumdiddly - I'm sorry you went through such a hard time and hope you are coping. I had heard of PGD, so although we don't yet know whether our genetic results, I appreciate you helping me see that there are options for the future. x

Coco19, like others here I'm thinking of you. The title of your thread does say it all, this really is the worst thing ever. having terminated my pregnancy at 31 weeks and know all too well about this being an utterly heartbreaking time for you and your husband.

You asked about coping, well I wish I had an answer for you. You will cope, there is another thread on this board, where many women go to find their way of coping and help others. I hope you find your way to us.

Posting here was very brave of you and there is no judgement, only support and hand holding, what ever you and your husband decide to do. I hope you?re taking each moment as it finds you. I remember trying to think ahead and being so overwhelmed by it all. I hope you?re able to rest and sleep and nourish your body for you need to kind to yourself in any way possible.

Much love.

A x

Coco, the thread busierbee mentioned earlier is here. This thread is mumsnet at its best - wonderful women who have unfortunately been through what you have been through and will offer you love, support and strength as you deal with your emotions. I cannot recommend it enough.

Thinking of you at this difficult time (hugs).