Worst time of our lives, need some hope

[Nik74]

This website has been really helpful recently but I felt that I now needed to ask for some help from you lovely people.
Apologies first off as I am rubbish with all the acronyms.

Just to give you a bit of background. My partner (he's 33) and I (I'm 35) decided back in April that I would come off the pill and start trying for a baby. I gave it a couple of months for the pill to get out of my system and we started trying properly by July. My periods were always 28 days and I had been using the ovulation sticks which were great. By August I was pregnant and we were absolutley over the moon. 2nd month of trying and we'd done it.

At 9 weeks I had a bit of bleeding and so popped to the docs to get it checked out and we were packed off for a scan which we weren't expecting but thought was great, everything was fine and baby was doing well! At just around 11.5 weeks were went for our first appointment with the midwife and a few days later went for the 12 week scan. This I couldn't wait for as I'd been a bit nervous up until then. I was having a great pregnancy with hardly any awful syptoms like my poor best friend who was sick as anything....part of me would have felt less panicky if I had felt crap, i know that sounds weird.

Anyway the 12 week scan is where it all fell apart. The sonographer was struggling to get any measurements as our little baby was wriggling all over the place so she asked us to go for a walk around and come back which we did about 20 minutes later. Once back in there she was still huffing and puffing trying to get the measurements. In the end she asked us to both sit down and that's when she told us that the nuchal fold was arounf 3.7mm and also my bloods had come back with a bad result and our chances of having a baby with abnormalities along with T21 was 1 in 5. We were absolutely shocked and numb. She then told us that in the circumstance we should opt for a CVS to find out for sure.

We were referred to St Georges Hospital the next day and the test was carried out. The staff there were incredibly good and were a lot more positive. We were told the results would be through in 3 days. After 2 days we got the call and that's when our world fell apart.

The CVS confirmed that our baby did have abnormalities as well as tested positive for T21 Downs. We made the heartbreaking decision to terminate and two days later I went into hospital to have a D&E. That was just over a week ago now and I feel like our world has just caved in. My partner has been amazing and I have no idea how i would have got through this without him. The irony is that I had divorced a couple of years back because, along with other reasons, he didn't really want kids. Then i meet the man I should have met all those years ago and life has just smacked us in the face with the worse thing we have ever been through.

We are still waiting to hear back from St Georges with the final test results in case this was also something genetic or if there are any other issues. We of course want to try again as soon as possible.

I guess I just wanted to hear from anyone who has been in the same situation and can offer a glimmer of hope that it all turns out right in the end. Sadly I know plenty of friends who have miscarried but no one who has had to go through the awful situation we have been through.

I guess i need answers and I know that only the doctor can answer a lot of them. How soon before we can try again?
what are the chances of it happening again? So sorry for the long message, just needed to get it all out.

Thank you

Can't help with your questions, just wanted to say how sorry I am for all that you have been through.

Don't lose sight of the fact that this is very early days, and you're bound to feel awful.

I'm sure others will be along with some positive experiences for you.

Also have no experience but wanted to say I'm so sorry for you both. I remember the worry and stress having these tests can bring and hope the future has better things in store for you.

Hi, no experience here either, just wanted to say I am sorry for your loss.

Some positives; (I hope)

I would have thought that as you conceived easily the first time, the second should hopefully be easy to.

And if there is a genetic/any problem, the doctors will be able to help you, with eliminating any risks.

Also, you are able to carry a baby. some people can't at all. So you have that first step covered.

I hope someone, knowledgeable comes along.

Thank you both for you kind messages. Taking it a day at a time. The thing now is that if we are lucky enough to get pregnant again its taken all the sparkle off the excitement because we will be so terrified of it happening again and those first 12 weeks will end up being the longest weeks. But we have to be positive, it's all you can do.

Hello Nik
Golly you have been through a terrible and traumatic time and you must still be in shock both emotionally and physically.
There are many women on some threads near here- support thread for women who have chosen to terminate 1,11, 111 and 1V - so many of them have had an ordeal such as you and have gone on to have healthy babies. There is little explanation or justice; you just were the one in however many but you will not be again. You are young, and healthy by the sounds of it. You sound very much in love; it sounds as if you partner is a comfort to you and you to him.
It is vital to have hope. Hope is part of recovery. But also allow yourself time to rant and sob and shout and feel overwhelmed if you need to. It is utterly understandable.
I have had two DS terminations (I am much older though, 42) so I do know the agony and the upside downess of it all.
Hold on tight and I am so sorry to hear your sad voice.
You are brave to post - I think retelling the story is important. It was for me.
Take care- rest, snuggle on sofa with chocolate and blankets and hugs.
Bee xxxxxxxxxxxxxxxxxxx

So sorry for everything you've gone through Nik - that's so tough. I wish you all the best for your next pregnancy.

Thank you Busierbee and I am so, so sorry you have been through this terrible thing twice.

I have been keeping a diary which i started when i got pregnant and my partner encouraged me to keep going and it is helping. Its good to rant in that rather than at him. But i will look at the support threads also.

Its only when something like this happens that you realise and learn just how many women go though such terrible and sad times and the process of getting and staying pregnant aren't as easy you probably think.

thank you and i wish you much happiness.
xxxx

Hi Nik

In a rush so this probably won't make much sense but I justed wanted to say that I have been in the exact position you were six months ago. Our risk came back as 1 in 2 after a nuchal measurement of approaching 5mm for our first pregnancy (I was 33), and our world turned upside down. The CVS result came back three days later as positive for T21 (the baby also had heart defects) and we had a horrible time deciding what to do - it wasn't a foregone conclusion for us. Eventually we did decide not to go ahead with the pregnancy, and I can honestly say it has been the worst thing I have ever been through. You probably feel like no one understands, and it's true - unless anyone has been through something similar, then no matter how lovely and sympathetic they are, it's not something they can truly comprehend. I know I certainly wouldn't have been able to beforehand.

All I can say is that by degrees it does get better. The first month was a real blur for us, we hid away from friends and the real world, and making the decision to slowly start trying to get back to something approaching real life was a struggle. For us, for me in particular, trying again was an absolutely essential part of the whole process, although it was terrifying and I did wonder if we were rushing into it too quickly. I got pregnant a couple of months later, but sadly miscarried quite early on. But, if this might give you some encouragement, I fell pregnant yet again immediately afterwards, and this time it looks like just maybe things might be ok - we had a very very detailed 12 week scan last week, and everything looked as it should. The 8 weeks waiting for that scan really were horrible, and I can't pretend to you that they will be any different, and the sparkle and innocence of the first pregnancy certainly has gone. But we did get through them, and while we are a long long way from having a healthy baby, I'm trying to relax now and start to enjoy the pregnancy.

I'm so so sorry to hear your news. You have to be selfish and just do whatever it takes for you and your partner to get through the next few weeks and months, but please know that it does get better. I still feel so very sad when I think about that first baby, and still wonder whether we did the right thing, but it is a less intense sadness now.

Kate xx

Hi

I am so sorry you are going through this. I was in a similar situation at the end of July. I had a scan at 21 weeks, abnormalities incompatible with life as they say were discovered, a few days later I had the CVS which confirmed my DS had Downs. The following week I went into labour and my DS was stillborn.

I understand how awful this is for you. You are heartbroken at the moment but it will get easier. I promise.

Allow yourself time and be kind to yourself.

I am 32 and was told my risk of another downs baby is now 1% (if I hadn't had DS it would be 0.3%). My consultant keeps assuring me this is good odds

I was also told that as soon as I had a period I could start trying againg - physically there is no need to wait.

Best wishes

Thanks so much for your messages Kate. I'm so sorry you had to go through 2 losses but many congratulations on your pregnancy. Its given me hope that we can try again.

My partner went back to work today which i hated but i think it was right for him to go and the people at work ( we work at the same place) have been very supportive. I'm no where near ready to face anyone yet and today was a struggle going to the supermarket...although i picked one where i knew I wouldn't bump into anyone i knew. I know i have to start to face people and I will but I need to take little steps towards it.

Thanks for your kind words.
xxxx

Thanks tinkerbellesmuse

I'm so sorry you had to go through this.

My doctor said that it would be a mistake to try too soon after the termination in terms of emotions but I feel its the right thing to do once I am able to and both my partner and I want to try again. I want to make him a dad, and he will be the best dad.

xxxx

Hi Nik, So, so sorry for your loss. I've just recently gone through exact same thing (although for another chromosome abnormality) and so i know exactly how horribly devastated you are right now. It's just so unfair.
I had my termination in September and am TTC again right now. Moving forwards with that is helping me alot. Take some time, cry, feel sorry for yourself - it will always hurt but it does get easier day by day
Lots of hugs Katie xxx

To Nik and Tinkerbelle, Katerina, Katiecubs

Just wanted to add that I am so sorry that you have all had to go through this heartbreak. You are all so brave. Life is so unfair.

Hi, I just wanted to add I know someone in her late 30's who had a baby with Edwards syndrome, ended up terminating despite being catholic and anti-abortion... she got pregnant again pretty quickly and now has 2 healthy children.

I would say try again as soon as you feel ready! No point waiting for the sake of it... Good luck!

Thank you to all of you for your messages.

My partner called St George's today and we have been told that there are no genetic problems and we were sadly just unlucky.

Just cried and cried and cried. Feel so relieved that we at least know we can try again. i will never take pregnancy for granted. It can be such a happy occassion but also one that can be heartbreaking.

xxx

Did not want this news to go unmarked and unlistened to.
You have every chance of having a healthy baby now - you can start trying medically speaking as soon as you feel ready I believe.
The emotional scars take longer of course to heal.
I wish you both well.
Is sad times.
Bee xxxxxx

Thanks for your message EmsieRo

I'm so sorry you had the same thing but a massive congratulations on your pregnancy, its given me lots of hope. I wish you well with the pregnancy and a speedy 12 weeks.

Thank you for the SANDS link. I shall also look on there. I have had the same as you with some people trying to then talk about their miscarriage and as much as the loss of any child is sad it isn't the same when we have been put in such a terrible situation to deal with. I know they are only trying to help and everyone has been amazing.

I'm terrified of going back to work and facing everyone as the week it all happened we had pretty much told everyone, almost feel stupid for not waiting until we'd had the scan. Also cleared out my wardrobe of all the clothes that didn't fit ready to get some maternity wear. Now I have to put them all back again. These small things feel like massive hurdles,but I'll get there.

I hope you don't mind me asking but do you know how soon you can start having sex again and if you should use birth control to prevent infection for a few weeks? I've not really been told anything. Off to the doctor on Monday to ask and also when its ok to start trying, do i wait for one AF first? All very confusing.

We want to try again as soon as we are able really. Silly really and I know 35 isn't that old but i've never been more concious of my age....doesn't matter how young you feel it doesn't mean the rest of your body is feeling the same does it.

Thanks
Nik
xx

Hi Nik,
So glad your results came back clear.I think one of the hardest things is trying to deal with your grief when other people don't really understand how it feels to be forced to make such a heartbreaking decision. I'm not sure i would have understood myself if i hadn't been through it.

With regards to trying again we were told it was ok to have sex after 2 weeks if the bleeding had stopped. I think we waited around 2.5 weeks. I have heard some people's doctors tell them to wait for AF to TTC again but mine said that is more for the emotional healing and it was ok to start right away if that was what i wanted. My AF ended up taking 7 weeks to come back anyway and i'm now on my first cycle properly TTC although i think it's going to be a long one again! In short i don't really think there are any hard and fast rules - just do whatever feels right for you.

I hope each day is getting a little bit easier for you and i hope you get your BFP very soon.

Katie xxx

Hi Nik,

I had a very similar experience in January this year. An increased nuchal fold was noticed at my first scan, I was referred to a fetal medicine centre where a consultant repeated the nuchal scan and we were told based on the measurement, the chance of Downs was 1:85. I had CVS there and then and the results confirmed Downs. I had a medical termination at 14 weeks which was one of the most traumatic experiences of my life. I was 24 and my partner was 26.

I would recommend getting in touch with Antenatal Results and Choices. They do an e-mail support group for people who have terminated due to an abnormality and it helped me a lot in the early days.

In my case, it was the kind of Downs that occurs by chance and isn't genetic. My consultant explained that because it had happened to me once, I would always be given a risk of 1:100 for Downs in future pregnancies.

I remember being desperate to get pregnant again straight away, but it didn't happen for us that soon because I had abnormal bleeding and it took a while for my cycle to return to normal.

I'm 18 weeks pregnant now and about to have an anmio tomorrow to put my mind at ease. All I can say is, be kind to yourself, it does get easier.

Claire x

Double post - sorry.

I forgot to say, I didn't tell work, I found it a lot easier to just say I'd had a miscarriage because the baby had problems. I work in a very large office and didn't want to be the topic of discussion and be judged by ignorant people (there's a few of them in that office) who couldn't possibly understand what I went through.

x

Thank you all so much for your replies to my message. You have all been great.

I have since been to see the consultant and she said that sadly we were just very, very unlucky. She was very pleased to hear that my periods are almost back to normal. The first one being 27 days after the procedure and the second 31 days after. We are of course trying again but one question I didn't ask and wondered if anyone has any advice on is can the termination affect your ovulation cycle?

I have been testing everyday with the ov sticks that you can get on Amazon (great price for lots!) but I don't appear to be ovulating and the same last month! I got a VERY feint line on a couple of days but that was it. Could it be that I'm not ovulating at all?

Any advice would be greatly appreciated.
x

Hi Nik74

Like the others have said I'm so sorry to hear what happened, its one of those things you never think will happen to you. My dad said to me when we found out (at 23 weeks, Turner's syndrome with cystic hygroma) that there is no point in asking 'why us?' but instead think 'why not us?'. I found that helped me, it was a chance occurance like yours and we just happened to be that one in 10,000 or whatever.

As far as ovulation goes, after pregnancy of any kind I think its fairly common for your periods to go a bit funny, mine certainly did. I know that its an overwhelming feeling of being desperate to get pregnant again after such a horrible time but I do believe that your body (and mind) needs to recover. We started trying straightaway, but it was only after 4 months that I in all honesty felt strong enough, and two months later I was pregnant.

I now have two healthy ds's. I made a decision as soon as I found out that I was pregnant again that I would try to enjoy the pregnancy as I had first time. I felt it wasn't fair on the next baby if I spent the whole time in a state of high anxiety. That wasn't always easy of course, though I felt a huge sense of relief once I'd got past the nuchal scan.

Have you tried reading any books about trying to conceive? I found this one excellent and I know a lot of people like this

Going back to work I found hard, as I was so far along everyone knew I was pregnant and it was difficult as some people just ignored me which really hurt whilst when people were nice to me I burst into tears. I went back on shorter hours to start with and that really helped. Don't rush into anything and look after yourself.

Oh nik, so very sorry.

Sorry, I meant to say. I recommend the books as they allow you to work out when you're ovulating without all the peeing on (expensive) sticks and, especially the Zita West one, reminds you why you're doing it in the first place.