Please come and talk to me, I think I'm actually going to fall apart this time

[jeffily]

Just had nuchal fold. Baby has 5mm of fluid and an abdominal abruption, which could be associated with chromosonal abnormalities. We're waiting for blood test results and rescanning in a week to see what is going on with the tummy. I'm devastated.

We have a gorgeous DD (16mo) and lost a baby before her to hypoplastic left heart syndrome- she was born and died at 23 weeks gest. I was prepared for bad news with my last DD, but this time I just thought we must have had all the bad luck we were due and that everything would be fine. My heart is breaking again. How can this be happening to us again?

We don't have all the information yet, but I am so scared. I'm scared that we will decide to go for the CVS and it will hurt me. Or the baby will be ok but I will lose it because of the procedure. And DH is wonderful and honest and knows himself well and has already said that he would not want to go ahead with a pregnancy when he knew that the baby had downs, but I can't imagine terminating another pregnancy. I feel so frightened for us- if the baby does have Downs is our wonderful, precious relationship doomed because if we don't terminate he'll not be able to forgive me, and if we do I'll never be able to forgive him? It's so unfair. I'm not sure I can cope with it again. I thought that last time had showed me how strong I was and that now I could deal with anything, but I never imagined that I would be here again. Waiting, crying, feeling sick. I just want to curl up in a corner and weep until I sleep. My baby, my precious little baby.

Thinking of you, and bumping for those with experience.

Jeffily, I'm so so sorry that you have to endure this uncertainty, worry, pain and anguish. You've already suffered one loss and that is surely more than anyone should ever have to deal with. There are some women on another thread here, who've sadly dealt with loss of a baby more than once. I'm sure they will be able to share their experiences with you. You are more than welcome to join us on the antenatal support thread.

You are very much in my thoughts and I hope the time to your next scan passes quickly.

I am so sorry that you're having to go through this again - life can be so bloody cruel can't it.

Can only tell you things from my experience - I terminated my boy at 16 weeks due to Downs, in all honesty something I will never get over and I will never know in my heart that I made the right decision but it is the one I made, so have to learn to live with it.

I couldn't have the CVS as the placenta was in the wrong position so had an amnio - I can tell you didn't hurt as such, it wasn't pleasant by any means but not unbearable and over quite quickly - I think CVS would be a similar experience.

The weeks in the run up to the final moment were awful, from the bad nuchal scan and bloods, to the wait for the amnio and then the final results - it all seemed to be going on for ever. During that time, I was adamant that the result would make no difference nothing would change, my husband was at completely the other end of the scale and made it clear that although he would support me he felt that we should terminate.

All I can say, from my experience is that you do not really know what you will do until the moment you know for sure the result one way or another.

I honestly don't believe my decision was influenced by hubby or the hospital - all I know was when I was sat in front of the consultant it was like something slotted into place and my decision was made - rightly or wrongly.

Nobody can or should try and tell you which way to go, unfortunately only you can make the final choice. Whichever way you go, it's you that has to live (either way) with the decision and it will be bloody hard (again either way)but you will get through it. And whatever route you take is the right one because it's the choice that was right for you (wise words from a midwife to me, I can't take the credit for that one!)

Take time for yourself, try and be kind to yourself and I feel that your choice will become clear to you, whichever choice you make.

God I wish no-one ever had to go through this - it's just not a choice that anybody should have to make.

jeffily - don't have time to post properly now but I've also had 2 losses; last sept we had a termination at 17 weeks also due to HLH and I miscarried at 18 weeks a couple of months ago due to an extremely rare growth disorder. Actually not due to that but that's another story for elsewhere. I also have a gorgeous 3 year old dd I conceived first.

FIrst time round you think , OK shit happens, I'll get through this. Second time round... well, I'm still here, can't lie and say I'm fine, I'm very very down but I got through the worst of it, as will you if you have to.

Mine were unrelated and it sounds as though yours may be too - not that I'm an expert and it's so hard to comprehend this level of bad luck. In my case so far that's all everyone has said, it's just bad luck. But as you say, first time round you think you've had your share of it.

I'm not in a very good place to say anything positive apart from I'm 11 weeks on and still here and I didn't actually break. Our situations are too similar and it's too recent for me to offer much apart from to say you're not alone.

But there are women on here who have had this kind of thing happen twice and have gone on to have healthy children and they're the ones you need to hear from now as they can give you hope.

It's so unfair, it really is. Thinking of you anyway.

Oh lovely - how wful for you.

We were given a 1 in 5 chance of DS for our baby at the 12 week scan. Both of our immediate thoughts were 'no further testing necessary as we wouldn't terminate'. Then I started to panic about what the right thing to do for the baby's sake was.

DH and I chatted as I'd got myself in to a dreadful state and he said that if the decisions were up to him alone, he would do further testing and then terminate if it had DS. He said that he would 'man up to it' if it did have DS and we discovered at birth.

This put me in to exactly the same dilemma as you describe. I was also wanting to do testing to rule out any other major problems but then didn't as we would both feel sick if we lost the baby and it had been 'clear' as it were.

After a week of feeling absolutely dreadful, I decided to spend the weekend presuming that the baby did have DS and taking DH at his word when he said it would all be ok either way and that he supports me. I felt at peace for the first time and that was my answer. We haven't done any further testing but I must confess to feeling absolutely terrified that the 20 week scan will show some awful abnormalities that force a dreadfully difficult decision. We already have 2 very young DCs.

I do feel for you and I don't know how you can feel at peace with this - perhaps try living with different scenarios for a couple of days at a time and see how it makes you feel?

You sound similar to me in and I guess that if your DH turned round to you and said 'I will love this baby whatever and I think we should just get on and enjoy this pregnancy', you would feel so much better?

DH did explain that he felt that he couldn't really relate to unborn babies and that to a certain extent you can just get pregnant again and not worry about it. It's rather different for most of us who are carrying them I suspect

and sorry - like you I felt that if I did go ahead with the tests, then that immediately put DH and I into opposite places and that in itself was going to cause a huge dilemma - neither one of us would 'win' and the consequences of either decision are huge.

It's a dreadful place to have to be.

Hello and I am so, so sorry you find yourself in this situation. I really hope that tests show your baby is okay and you don't have to face another loss.

I, like Peanuthead, have lost 2 babies. I terminated at 13 weeks as my baby couldn't have survived (chromosomal abnormality) and at 20 weeks because my baby had no kidneys, which is a fatal prognosis also. The second time, when they broke the news to me during the anomaly scan, I wailed that I couldn't go through it again. I really believed I couldn't = hence my Mumsnet name. But I did. Somehow. It was hard and horrible and I still feel sick even when a scan comes up on TV. But I survived.

And I'm not sure if I should say this or not, but before those two losses I already had a healthy DD and I now have another healthy 4 month old DD2 I never believed I could have.

But I hope above all that your baby is okay. Thinking of you.

Thinking of you.

Thanks everyone for your kind messages and your words of support. They mean a lot.

We have been away for a few days to try not to think about it too much and to pass the time in the waiting. I think I have come to a kind of peace with the idea that if the baby does have Downs I will terminate the pregnancy. remember, you are completely right, if DH was prepared to give it a go I would continue with this pregnancy. But he is selfish, a fact he has admitted himself (which I think is incredibly brave of him) and he needs to have lots of time to himself. I knew this when I married him, so I'm not complaining, just stating the truth. I really think it would be the end of us if I carried on with the pregnancy and the bubba did have downs, and then I would be a single mum, my DD would not live with her dad and I would have a downs child to care for effectively alone. It's a dreadful decision to have to make and my heart is breaking over it but I feel better for having decided. Who knows if it will change when we get concrete results though.

peanuthead and can't thanks for sharing your experiences. I'm so sorry you've both had this sadness too. I am taking joy from my wonderful DD at the moment, and I hope that you both get much happiness from your LOs. It does make me feel there is hope to hear that there are others out there who have suffered losses and choices like this and who survived and went on to have more children.

Scanning and CVS on Wednesday and then the wait for the results. I'm trying not to think beyond there at the moment.

Thank you again, everyone.

We came to the same conclusion when we got our 1 in 2 Downs result from the nuchal. The weird thing is the evening before the scan I'd been talking to my sis about Down's and I'd said there was no way I'd terminate for it and that I'd have to convince DH or we'd divorce. But then when we got the bad scan I knew I couldn't have a Down's baby and I was so relieved that DH and I both felt the same. I don't think anyone knows what decision they'll make til it happens to them. Will be thinking of you and the horrible waiting. It's a year ago today that I had my bad scan and so a year ago we had 5 weeks of waiting til we terminated so I do feel for you/ Good luck tomorrow.

Hi Jeffily, I'll be thinking of you today.

I was reluctant to post, as I have very recently (only last week) had a termination for Downs, and I'm still feeling in a bit of turmoil over it all.

However I feel very strongly that we made the right decision for our family. As peanut has said, until you are the one given the awful news, you cannot know for certain what you will do.

It is an absolutely hellish place to be in. I hope you and your DH can take comfort from each other and your precious DD.

I have found posting here to be a great comfort. Take care.

Hello all

The last couple of days have felt quite unreal. We went back for our scan on Wednesday and the abdominal abruption seems to have gone. The baby is growing fine and the consultant said that he was not seeing anything that he would be worried about. After discussion with him we have decided to wait 2 weeks for amnio as the CVS carries the same risk of miscarriage as our risk of Down's from the nuchal and the bloods (both 1.4%). We have a heart scan on the 7th Sept and then the amnio on the 13th. So there is more waiting now- it feels so odd. On one hand I am relieved, and feel much more hopeful. On the other hand I am well aware that someone has to be the 1- we have already been the 1 in 5,000- and that there is no reason why it should not be us. Am trying to keep busy, hold my head high and get on with life and enjoying my DD.

Just needed to let someone know what is going on, have told almost no one in RL and am in a state of constant questioning myself about the choice we have decided we will make and the reasons why. Thanks everyone who has posted for me. Your words and your sharing makes a big difference.

Glad to see things look a lot more hopeful for you. I'm sure it's been said to you before, but odds of 1.4% are really in your favour!

I hope you manage to keep busy, it is great that you have your DD to focus on - it's at times like this that our children seem all the more precious.

It's a strange kind of limbo to be existing in - all the waiting is very stressful, but delighted that you have been given good reason to hope that all will be well.

Take good care of yourselves.

when our dd1 was 20 weeks in utero they mistakenly at the local hospital diagnosed her with a HLH - we then awaited a further referral to a London hospital where we learnt that dd1 had a different type of heart defect - scary and very serious but ultimately repairable quite easily - basically she had no central wall in her heart between the two sides.

We were also told if she was born without down syndrome it would be very rare. Dh and I were okay about that in that we had known families - who had members who happened to have Down syndrome and it was not as scary to us as her heart defect.

We decided against an amnio as it would not have changed the outcome. We had decided prior to this cardiac scan in London that she would be born and we would take it a day at a time and go from there.

Anyway she was born over 8 years ago now and does happen to have down syndrome.

In those 8 years she has gone from strength to strength. She attends a mainstream school and has attended a mainstream kindergarten, she does dancing and swimming and is hoping to start playing in a football team. She goes surfing in the summer.

She is funny and witty and charms everyone who meets her HOWEVER is not always so loving and happy as the stereotype goes - in fact can throw the biggest strop when she wants to.

However I now am a mother to three girls and she has by and large been the easiest to care for and raise.

Our hardest times have not come from her having down syndrome but from encountering people who believe that she should not have been born and if we knew before she was born why did we decide to have her! ( yes that was said to me.) To people who think it is still 1950 and we should shut people with intellectual impairments of any kind away and not allow them to even share the same space as us. To ignorant people who cannot see beyond the down syndrome to see the wonderful young lady she is. BUT you know - these are actually few and far between that they make more of am impact because they are so rare iyswim.

At school - she has lovely friends and is very much a part of the school community - is in the junior choir.

We have dreams for her - she will grow up and live relatively independently - actually I know no doubt she will given that she is such an independent little thing. She will probably marry - much to dad's concern!!She will hold a job of some description. She will be happy and fulfilled. That is all we ask for each of our children.

day to day care of her is really so easy - My next two are so hard sometimes it does make me laugh when they are giving me a hard time and she is not. That is not to say she is not a 'typical child' in terms of her behaviour - you know fighting and squabbling with siblings, moaning about them annoying her, moaning about mum and dad asking her to do things. She is expected to help out around the house - no free passes in our place.

I look back over the last eight years and feel I have had experiences and met some of the most amazing people since having dd1 and I know I would not be without her in my life. It is not hard or unbearable or anything negative that was said to us prior to her birth - it is just different.

Hi eidsvold, thanks for sharing your experience of your lovely daughter. Your post showed really clearly how much joy any child can bring to the life of their parents and siblings, regardless of whether they happen to have Down's syndrome.

The part of caring for a child with Down's syndrome that seems the hardest to us is not while they are a child, but once they are a grown up. My DH in particular worries about being responsible for another person for the rest of his life. As I said in one of my posts, he is a selfish person and though he loves our DD to bits I know he is already looking forward to when she will be a bit more independent and he can get on with his own stuff more.

I would never, never suggest that anyone should not have continued with their pregnancy because they found out that their unborn child had any kind of difference to the norm. I strongly believe that all families are different, all individuals are different, we all have the right to choose what path we take. And ultimately we all have to live with the decisions we make.

My DH has been very clear that he would not knowingly bring a child with DS into the world. I am not sure what my decision would be if I was in a different relationship, with someone who felt otherwise, and I am still not sure what my decision will be if I am faced with the choice- have my baby with DS, or don't have my baby at all. But at the moment I am thinking that I cannot force my DH to do something he has clearly said he does not want to do, even if the price that I pay is spending the rest of my life knowing that I am missing out on the kind of rewards that you sum up so eloquently in your post.