Saying hello

[bezzyk]

Hi

I've been following a couple of threads that were on the 'pregnancy' board, but I was never brave enough to post. I'd like to pass on my deepest condolences to all of those who (like me) have been suffering so much in the past weeks.

Anyway, I now feel brave enough to say 'hello' and to post my story.

I have a little girl who's just turned 2. While I was pregnant with her, I had the routine triple blood tests done, which came back as high risk downs (1 in 85) I went ahead with the amnio, which in itself was a very traumatic experience (not so much the procedure, but the agonising wait involved) anyway, we got the all clear, which was a huge relief.

In January this year, i was delighted to find out that I was pregnant again with our 2nd baby. After the whole amnio episode with my previous pregnancy, we decided to pay and have OSCAR screening privately, to put our minds at ease. That's where everything started to go wrong.

OSCAR test gave me a 1 in 26 chance of carrying a Down's baby. I decided to stay positive as I realised that I still had a 96% chance of having a healthy child. Well, that wasn't to be, and after a (painful) CVS test, I found out a couple of days later that the baby did in fact have Down's syndrome.

We were devastated, as I'm sure all parents are when they receive this kind of news, and shortly afterwards, decided that having this baby wouldn't be the best thing for my family, so we decided to terminate. This was last Monday, the 6th of April.

I've been in pieces ever since. I don't regret doing it, as I believe it was the best thing for us, I'm just so angry and scared for so many reasons.

My biggest concerns are that I NEVER want to have to go through this again, so not sure we could ever think about trying for another baby.

Thanks for reading my rant, just putting my thoughts into words has helped me a little.

Eulalia, I'm 37 but I keep forgetting! Yesterday, I thought I was 36. sigh.

BB thinks she's older than she is!

Are we a particularly ancient bunch?!! Where are all the 20-something mums....? This year has aged me more than usual.

I am definitely the oldest! Have posted on the main thread.

I am 51 - so win hands down!
Only joking - in fact only feel 51 when in fact am 41 and 42 in September. And like you have three children already. I know you are going to the consultant today -are you going to ask Eulalia about the chances of having another unaffected baby? I know you got pregnant accidentally and i must say I was very ambivalent about having a fourth child to start with. But now I think about almost nothing else.
Thank you for replying to my message on other thread - am popping back there now
BBxx

hi to all of you in this warm corner of mumsnet- I have been reading some of your stories with tears streaming down my face. My heart goes out to you all and how brave, honest and open you are. I am not sure this is the best place to post or if I should be here at all but I guess I am here looking to see how others have coped with making tough decisions. I am in that hellish time waiting for results from my amnio. During my booking scan about 5 weeks ago my baby was diagnosed with a cystic hygroma. We were told that there was a very high risk of Downs, Turners and or heart defects and that our baby was unlikely to survive more than a few more weeks. I have been in shock since that scan and we have just been waiting. I am now 16 weeks and my baby looks active with a reduced swelling and I had an amnio yesterday (a CVS thought to be too risky due to the position of the placenta). The rapid results are due friday. Now I have written all this I don't know what else to say.....I guess maybe thank you for sharing your stories as I have found the support you have given each other truly touching.

Alof
What a traumatic time for you - and how brave to reach out and post here. You can post on any of our threads and someone will always be there for you. The waiting is terrible, terrible, terrible. There must be still some hope that all will be okay as these things do sometimes surprise doctors - but if it is not... we will be here for you.
Post whenever and however you like -the tears are to be expected. There are so many of them here.
I hope you have love and support around you -and that you can get through these next few impossible days.
With thoughts and support to you
Busier Bee
x

Alof,

My heart goes out to you, I know only too well the anguish of hearing that something is not right and waiting to find out more. I just kept thinking that I had to stay calm and positive though because I thought a calm me would mean a calmer baby.
There are lots of stories on here from people who have had problems picked up at the scan and their baby has been fine, or required an op and then been fine, so stay hopeful. Let us know what results you get on Friday. Thinking of you.

thank you samandbeansmum and busierbee - your words and thoughts are kind and appreciated.
I am hoping and also trying not to hope as then i think that it could just make things harder. I feel so exhausted, and i seem to have lost my marbles and forget and do the most stupid of things - it doesn't help that this pregnancy has been physically demanding as I have been really suffering with sickness and this has made me very nervous of having the amnio. I miscarried with my first pregnancy though I am now a proud mummy of a wonderful 19 month old son - he is at nursery this morning so I have been home alone - good to have some space but maybe its allowed me to think just too much. friday just seems so far away and so life changing. i am scared, scared of walking into the hospital, scared of how I will react, scared of the results and what they will tell us and scared of how I will cope with what the future may hold. I don't feel I can really talk to anyone at the moment for fear of what they might think and how we might be judged. I have tried to keep out of maternity clothes as can't bear the thought of having to pack them away again and now I am hiding in big baggy shirts and fleeces trying not to look pregnant - its these thoughts that seem so absurd but so real to me. Never thought I would post on something like this.
I can't stop crying today and that also seems absurd.

Love - is not in the slightest absurd to be crying, you are going through such an enormous trial. You know... it might all be okay. Gosh I have read so many posts by scared women like you and it turned out okay. Especially if your baby does not have the other markers for DS or Turners. Do you know? If you feel like writing about it- any of it - please do not feel you would be judged here.
I was a wreck whilst waiting for my results - it was a surreal time. I also could not face pregnancy clothes - the whole thing felt like a cruel trick.
You are full of fear and I was too. It is a terrible time.
Just somehow get through each moment and think 'there goes another 5 minutes, hour'. And immerse yourself maybe in your wee boy -hold him and squeeze him.
If you fall, IF you do, we will catch you. The support i have received here has saved my sanity.
Hold on tight
BB

alof - I missed this post yesterday, just adding my support also. Poor, poor you. Talk as much as you want, it's good and it helps to fill the time. Will hear from you on Friday. All the best xxx

alof, just wanted to say hello and that we are thinking of you in that horrible waiting time. Its grim isn't it, waiting for tests, then results and notknowing. But we are all here for you and are keeping our fingers firmly crossed thatall will be well. Write as much or as little as you need to, even a quick post here to say, 'hello,' will get replies!
I have been in your situation and know what you are going through. My story (stories) had sad endings but there were other Mums on my thread who had great results. Sending you lots of hugs. Lins xxx

Thank you thank you. I had a dreadful day yesterday but a friend gave me a call today and suggested meeting out for lunch and i think that and looking after my little one has really helped keep all those fears at a slightly easier distance. I don't how others felt but sometimes I feel like I am in a dream. I guess this time tomorrow the waiting will be over and perhaps that will be a relief in itself.
In answer to your question Busierbee because they found the cystic hygroma at just over 10 weeks and this has such a high association with certain outcomes we knew we had to wait to have a cvs or amnio and didn't bother with blood tests and so on. If these results prove good then we are scheduled to have a detailed heart scan in 3 weeks time as at the time of the first scan they suggested that a heart defect was very likely. We have been lucky in other respects as each subsequent scan I have had has shown my wee baby to be growing normally, to be very active and for the hygroma to have reduced in size so they have told us there is hope.
Linspins and Eulalia - what can I say except I have read your stories and send my warmest wishes to you both. Its all so so sad. x

to those that have have written kind words. We seem to have luck with us and the rapid results have shown no evidence of Downs, Turners, Edwards and Patua syndrome. I don't know what i can say to those that have lost thier little ones after such a different result except I will never ever forget where I have been and where I might have been heading and my warmest thoughts go to you. We have detailed cardiac scans scheduled for a few weeks time and and so it will be a while yet before we know if how he or she is doing but it looks so much more promising now.
I feel now I want to give something back but not sure how or what.
thank you for your support as it has been deeply appreciated.
alof x

Alof, that's really good news and a step in the right direction. How many weeks are you now? Where are you having your heart scan? We went to the Harris Birthright centre at Kings, and they were very good. Do you still have further results to wait for from the amnio? It's hard sometimes when the first results are good having to wait two more weeks for the full results.
Glad things are looking more positive, fingers crossed for the scan. Keep us posted, cos we'll all be thinking of you! Lins xx

Alof, that is such fantastic news for you and your family, truely fantastic. You must be so relieved. I am so pleased for you all.

Marj

Great news, really pleased for you and your family. I hope all the future scans go well.

I am now 16 weeks and 3 days and boy am I counting.
We still have to wait for the complete amnio results - I think another 10 days. They seem to be focused on the heart scan now - apparently we have to go through the route of the 19/20 week "abnormality" scan at the local hospital and then wait till 24 weeks for a more detailed heart scan and if they pick up anything there they will send us to cardiff - we live in south wales. I know there is a private unit in caridff that has a super duper scanner which can do more detailed heart scan but again it seems to be at 24 weeks. I am not sure what to do really - wait or pay for a private scan at a specialised unit or what? Any thoughts would be welcome. My husband is now thinking only positive thoughts and is not concerned at all - me well I think we have a little way to go considering they have found a problem though evidence of the hygroma seems to have more or less resolved though the cause isn't known. still I feel a huge weight already lifted off my shoulders and now more able to cope with the toddler who hasn't learnt the art of sleeping!
alof