1:86 chance there's something wrong, and feeling very alone

[AussieMum79]

Hi all,

This is my first time posting on here. I am 30 years old and pregnant with my second child. Last week I was told after having the ultrasound/blood test that there was a 1:86 chance of there being something wrong with the baby, they are concerned about the thickness of the skin around the baby's neck and combined with the blood tests they've concluded that amnio is needed. I go in next week to have it done and we're going to be paying extra to have the results the next day.

My husband and I have concluded that if there is something wrong ie downs syndrome or tricomy then we will terminate, something which goes against our every belief. These are not conditions we would be able to cope with, and don't feel it would be fair for our son either. Although it doesn't take away from the fact that I am devastated. I try to keep up a brave facade for my husband and son, but while they are not home during the day I am usually in tears. Our families are in full support of us whatever the outcome or our decision, but my husband is convinced there is something definitely wrong, and has written off the baby completely, even after the specialist talked about there being an 85 in 86 chance the baby is fine. I feel like he's pushing me away also and while I do have the support of my family I still feel so alone.

I'm sorry to hear that. I don't have experience of this but I'm sure someone will come along with some information either today or tomorrow.

I suppose these are going to be very difficult days for you, but keep strong, in a few days you will have a more accurate idea about what is going on that would be the base for any decisions you take.

Sorry to hear it is such an anxious time,

Nuchal fold thickness is used as a non-invasive screening test. I know it doesn't help, but you have to deal with what you know for sure.

My sis terminated a pregnancy because of a trisomy (not Down's, which she personally felt she could have coped with). It was so hard, so my heart goes out to you.

Sorry you are in this position. If you would definately terminate the pregnancy then I guess the Amnio is the way forward for you. There are lots of threads on here about women who have gone through this - many with good outcomes.

Your husband is probably just coping in his own way. However the specialist is right 85/86 chances isn't bad.

As someone else says - nothing is certain at the moment. Try to take your mind off it until the test. Good luck.

Dear AussieMum.
I'm so sorry you're having to go through this and I understand entirely what a worrying and upsetting time this is for you. I was given 1:4 odds of Downs Syndrome almost exactly a year ago and followed up with CVS and then a termination when the results came back as T21. There's nothing I can say that will magically fix this situation for you, but I definitely can tell you that you are not alone. There are many individual threads on this board from women who have been in similar situations, as well as the two longer-term support threads where women who have unfortunately had to make the decision to terminate gather. You might want to read through a couple of threads to reassure yourself that your feelings here are perfectly normal, and the women on any of those threads would be happy to offer a virtual hand to 'hold' while you get through the next few days.

Please do hang on to the fact though that there really are 85 out of 86 chances that everything is ok with your baby. That's nearly a 99% chance (98.8% to be precise) that everything is fine. Which is pretty good odds really when you look at it. I know that doesn't help very much when you're waiting for the tests, but literally your results mean that in a group of 86 women with the same measurements as you, only 1 baby would have a chromosomal problem. 85 will go away reassured, and I'll keep my fingers crossed you are one of them.

As well as the support you can get on here, you might like to call the helpline of the charity 'Antenatal Results and Choices' - look them up on Google. They are staffed by women who know all about going through these tests and offer fantastic support and advice. It might really help you to be able to talk to someone else if you are keeping up a brave face for your husband. Good luck - and hang on to the 98.8% chance that all will be well.

Sorry - after that mammoth post, I just had one more thought to add. From my experience, and that of another friend who is unfortunately in a similar situation this week, I think it is really helpful that you and your husband have had some discussions over what you might do if a chromosomal problem is diagnosed. However, I would just add that it is impossible to really know what you would do in that situation until you are actually there. So please do not worry too much about making a decision at this point and don't worry about other people's advice either way - hopefully you will never find yourself needing to make that final decision but you cannot possibly know how you would handle it unless you do. Fingers crossed you're in that magical 85!

Do get in touch with Antenatal Results and Choices. They are lovely and will help you think through your situation.

The Screening Midwife at my hospital was also fantastic. She Offered us a huge amount of support and spent ages explaining everything to us once the doctors had dropped the bombshell and swiftly disappeared. Can you access the same at your hospital?

You must be reeling right now, give yourself a few days for it to sink in. 1 in 86 sounds like a frightening number but it really means that the odds are overwhelmingly in your favour of there being nothing wrong at all. We were given a 1/11 chance of DS and 1/42 of EdwardsSyndrome which was v scary. That was a few weeks ago and although I was devastated at first, I feel fine about it now. I'm holding on to the fact that there is a 90-odd percent chance of there being nothing wrong at all. As my SIL said, a 90% chance of a healthy baby is all anyone that's pregnant could hope for.

I hope everything turns out ok for you. Keep us posted.

My heart goes out to you, it really does. We're in a similar situation. My double blood test came back with 1/49 chance of a having a baby with Downs. Very high HcG levels are also associated with IUGR (intrauterine growth Restriction) and pre-eclampsia. So there's more to worry about. That was about seven weeks ago. Once I knew I was 'high risk' I took three days to decide whether or not I wanted to know the precise odds. I just wanted to black it all out and wished I'd never had the stupid test. My husband eventually made the decision and we learned the 'exact' odds (1/49).

We decided against an amnio, with great difficulty, on the grounds that we could cope with baby with DS. That was just our decision, but it was reached only after much laboured and tearful discussion. I was later in my pregnancy when I found out I was high risk, and I could not think about a late term abortion. I am still terrified about how I might cope with having a baby with DS. For the first few days after the news and decision not to have the amnio, I was in tears. All the time.

Sitting out the rest of the pregnancy has been difficult, but actually getting easier and easier. I'm now 23 weeks and feeling OK, relatively speaking. It's amazing what one can get used to, live with and accept. We're just trying to accept all possible outcomes and prepare, at least on some level. Above all, I'm holding onto the 48/49 chance that all will be fine. Yours odds are better still. I'm thinking of you and hoping you're coping better and better every day.

HIJACK

Mainer there is a wee thread at the minute in special needs with some new mums to children with Down's syndrome. All v positive, you might find it useful.

Thank you all for your kind and understanding words, it helps to be reading about people who have gone through and are going through the same thing. My amnio appointment is on Monday morning, hopefully we'll have the results the next day and will be able to take it from there. I'm one of these people that if I want an answer to something, I want it straight away, so the waiting game is a difficult thing for me. But, I have a gorgeous 6yr old and thank the heavens every day for him. I'm trying to keep my mind off things, focus on the positive (we're very close to getting our loan approved and so we'll be focusing on getting plans together to build our house) and push all that is negative aside for the time being. I'll update once I have the results

Aussiemum - try and stay positive, we were given 1 in 2 odds of T21 and our little one is absolutely fine - he's 15 weeks old now.

I hope you get the same result x

Hi All,

I had my amnio yesterday and was feeling fine afterwards, I just got back my results and we've been given the all clear!!! I burst into tears as soon as I got off the phone from the specialists office. So tonight we'll be celebrating my Dad's 65th Birthday and the results and the baby is all good Thank you all again for your support, you have no idea how much I appreciated it

Fantastic news AussieMum - so pleased for you

What great news,I am so pleased for you

Great news! I am delighted for you.

I'm so glad it worked out well for you; now hopefully you can relax and enjoy the rest of your pregnancy

Fantastic news Aussiemum, what a relief for you xx