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Hope please!

9 replies

Cinnamondog · 29/03/2011 14:34

Dear all,

Wow - new to all this so please go easy on me!

Feel a bit silly as I am not currently pregnant. I was, until last Wednesday. 10.58am to be precise. I had a TOP at 13 weeks as my 12 week scan had shown not only did our baby have a high chance of Edward's Syndrome, (with a nuchal of over 6mm), but her stomach was herniated and her intestines were growing outside her body. Being told by the consultant that I could either TOP or miscarry as my baby would not survive more than a couple more weeks was the most soul destroyingly, hideous, awful moment of my life. Closely followed by coming round from the general anesthetic for a termination I did not want and realising I was no longer pregnant.

Any of you in a similar situation will know the utter despair that I am feeling right now. My partner and I have spoken for hours and hours about the way forward and our options, and we are both desperate to try again. But we are both really, really scared of this happening again. We know the odds of being so unlucky again are low, and that we will be monitored closely if we a lucky enough to get pregnant again, but I need to hear from 'real people', not consultants and midwives quoting statistics. We both have healthy children from previous marriages, (though my little man has ASD), but I'm hearing so much conflictin advice re; chances in the future, problems with my age, (I'm 35), how soon we should wait.

Help? Please?? Need something to give me hope, or at least stop me crying!

OP posts:
ghislaine · 29/03/2011 16:01

Dear Cinnamondog, I'm so sorry for what has happened. There is a thread here: www.mumsnet.com/Talk/antenatal_tests_choices/978305-Antenatal-support-thread-for-women-who-have-chosen-to-terminate?pg=24 where you can talk to women who have been through what you have been through. We can hold your hand, answer your questions about trying again, future risk, anything you want or need to talk about. There are many women on this thread (and its 'sister' thread) who have gone on to have healthy babies after a termination for abnormalities.

You can read my backstory on that thread if you like, but I just wanted to say I know exactly what you mean about coming round from the anaesthetic. The awful realisation of where I was and why. In the background there was a child crying for its mother. I burst into tears and a lovely dr came and held my hand and told me it wasn't my fault over and over again.

ExitPursuedByALamb · 29/03/2011 16:04

Dear Cinnamondog. Nothing to add of any use except to say I am so so sorry for your loss and hope that you find some comfort on the threads that ghislaine has directed you to. I am sure that MN will be of great support to you.

manitz · 29/03/2011 16:51

hi cinnamondog. It's early days for you at the moment and I think it's really natural for you to feel in despair but I found as time passed that the grieving became less intense. I second Ghislaine that the thread is really supporting. i had 2 kids then a termination because dd3 had half a heart then i had ds who is now 2.5, it was very nerve wracking being pg but lovely to have him. Unfortunately, after that i had ds2 who had T21 and hydrops and had a second termination in october. I am now pregnant again and really scared of my upcoming nuchal scan. I'm now 38 and obviously the older i get the more chance something will go wrong but I know it is all just chance.

Are you going to have genetic counselling? TBH most people just get told 'its one of those things' but it's useful to have a professional tell you that. I tried to conceive after my first proper cycle. I'm in two minds about whether I can cope with another pregnancy but sometimes i just go with gut instinct and i'll be elated if everything is alright.

Cinnamondog · 29/03/2011 18:02

Thanks for the posts everyone; will definitely hop onto the post Ghislaine and manitz have recommended. I'd like to say that it is a comfort having other people knowing exactly how I feel, but I just can't believe how many of us there are! It does help knowing I'm not alone, but I wouldn't wish this on anyone. What does help is knowing that there is light at the end of the tunnel, one way or another, and that there is support out there.

Haven't been offered genetic counselling; we were told that we'll have a meeting with the consultant who diagnosed little one's problems in about 5 weeks so I guess that'll be the start of that process. We have contacted ARC, which was recommended both by the lovely midwife who looked after us at the hospital, and the nurse at BPAS, (where we had to go for our termination; I couldn't face being awake for the procedure and our local NHS hospital wouldn't do a GA because I was 13 weeks). Hoping all this will help in some way.

Think the biggest trauma I carried from last Wednesday was sitting waiting to be discharged, listening to four women, (of varying ages), laughing and joking about how at least they could go out this weekend/ would be able to fit in their favourite jeans again/ wouldn't have to put up with throwing up any more. One even said she hoped her boyfriend had been 'f*ing bored' waiting downstairs for her. So many people are so desperate to have happy, healthy pregnancies, it just doesn't make any sense. I guess these things don't; fairness and good sense just doesn't come into it.

OP posts:
blacktreaclecat · 30/03/2011 09:31

Hi cinnamondog
I'm sorry for your loss.
It is 2 weeks since I had tfmr for T21 and heart problems at 13 weeks; we were also told the baby wouldn't survive to term and unlikely to survive second trimester. The nuchal was 11mm and the baby had oedema all around its torso.
I really didn't want medical management - they really tried to talk me into it but I just couldn't face it so had to go to Marie Stopes. The NHS would have done surgical but I would have had to wait over a week. First they said I had to have it done before 13 weeks then suddenly because they couldn't get me on a list they were offering it at 13+6!
I know just how you feel - it feels so wrong being in a place where most people are terminating healthy babies when you would give anything for your baby to be healthy.
I was very worried about how it would be after in recovery for just the reasons you described it sounds awful for you. I was lucky that I was alone with a lovely nurse for most of the time and when 2 other women came through they didn't talk.
How are you feeling physically? I really want the bleeding/ brown discharge to stop. We want to ttc again as soon as af arrives.
We have been given a 1 in 100 chance of recurrence; I'm 33. We have been ttc since 2009 with a mc on the way so are thinking of IVF with array CGH if I don't conceive again quite soon.
My counsellor said to me the other day that if you have a 1% chance of winning a raffle you won't expect to get a prize. Chances are all will be OK next time.
It is so unfair - I know so many people even late 30s early 40s who have had healthy babies. We waited so long and were so excited and happy. I can't believe it happened to us.
I am trying to get back to normal. I figure if I spend all day crying my body will never ovulate and we'll never get pg again so mostly am trying to fool it into thinking all is OK. I do keep bursting into tears over stupid stuff though.
Take care of yourselves
xxx

Cinnamondog · 30/03/2011 14:42

Hi Blacktreaclecat

(A treacle cat and a cinnamon dog, we sound like we are baking a cake!).

So sorry to hear about yet another little one lost in such sad circumstances. Just like you, I couldn't bear the idea of 'medical management', (what a phrase!), despite being told that it would be helpful for 'diagnostic reasons'. It just seemed too cruel a thing to go through, though I completely understand that for some other ladies it is an important part of the grieving process. Just not for me.

Physically, I feel fine. Still a little bleeding etc. and like you I am kind of desperate for it to stop and my first real period to turn up. Me & partner have decided that we do want to try again, initially we were thinking in 3 months as recommended but I just don't know if I can wait. It sounds so odd to say that, almost as if I've forgotten little one already, but it's not that. I'm not trying for a replacement, or to take away the pain I feel, but that unbelievable urge to be a mummy and daddy that lead to me becoming pregnant with our baby girl is still there, for both of us.

We haven't received any kind of counselling/ odds on this happening again yet. The only thing that we have been told is that if the baby did have Edward's in addition to her diaphramatic hernia, (the problem that meant she would not have survived pregnancy many more weeks), then the chances of this reoccurring is half a % higher with the next pregnancy. I'm 35 so my chances of Down's/Edward's etc. is slightly higher, (and increasing at a scary rate, if you believe the statistics), but the chances of having a perfectly healthy baby are higher still. I keep trying to bear that in mind when the black cloud descends and I cry myself into oblivion!

I would say, (and you can ignore me if you wish - many do!), don't try to get back to normal, not yet. What is normal anyway? You have been through a heart breaking experience and an experience that is darn well unfair. You have to allow yourself to get through this in whatever way you need to; bear in mind it is still really early days, for us both. I know my hormones are still everywhere, and that is enough to make a girl go a bit crazy at the best of times. The important thing is that you look after yourself, accept that this experience will have changed you, (in my case, for the better I think. I've realised that I am stronger than I thought, that I have so much to be grateful for and that I will be a mummy again), and try to have a little hope. You have a plan in place with ttc, that's a good start. Just don't be too hard on yourself.

As for those people I mentioned, I've realised that they are unimportant. We all have different priorties in life, and while life is very unfair sometimes, dwelling on their attitude will just upset me more. I can't change what happened to my baby, and to think about 'what ifs', even though it is so easy to do, is just a form of self torture. I don't deserve that, none of us in this situation do.

Chin up, cry as much as you want, eat your body weight in chocolate and let me know when you are feeling better. Or even if you are not.

We'll get through it - trust me, I'm a complete stranger on a chat room thread, (I know,I have a very weird sense of humour)!

In all seriousness, take care, big hugs xxx

OP posts:
NatzCNL · 16/04/2011 10:36

Bump

BooBooGlass · 16/04/2011 10:37

Ntz why are you bumping so many threads?

NatzCNL · 16/04/2011 10:40

Sorry BooBoo, MNHQ is being stubbon in moving the upsetting thread out of AT/C so am deleting it by pushing it to the bottom x

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