[ABABA]

Wow, I wish I had found this forum a 6 weeks ago!! I too have had to make the heart renching decisions, so many here have. I would like to share my story as my friends don't seem to want to talk about it, and I don't want to worry my husband too much.

We were floating in our happy little bubble, expecting our first child, a planned and so wanted baby. But had our bubble burst with the 2 days of bad news. The first day the doctor tells me I have had a high grade abnormality come back on my Pap Smear (which was done early because of bleeding), but got to the end of this day thinking baby is ok and this is treatable!

The second day (yep straight after that news), the doc calls and again and wants to discuss the 19 weeks scan. The doc says our baby has severe heart and brain problems, had to wait 4 sleeps to see the specialists, it was confirmed plus more problems. Had an amino the next day and it was confirmed Trisomy 18.

I didn't even now what this was or that is was a possibility, our 12 week results came back low risk (1 in 1627 for T18), but the doctors just kept saying it's an incompatibility with life. We choose to terminate at this stage I was 20 weeks. But because I live in QLD we had to wait to see the right doctor to be able to take RU486 in order help things go better (giving birth was my only option, they wouldn't do a medical termination). By the time things happened I was 22 weeks, and Amelia was born 22+3 weeks, 300g and 26.5cm long.

Now things have settled with the baby, I am now worried about the CIN3 pap result as I have another couple of weeks to wait to get this looked at, I'm really worried it will affect my chances of falling pregnant or to carry a baby to full term. Amelia can't be my only experience with pregnancy or birth!

Sorry for the long post, I really needed to say this all again as sometimes it just seems like a bad dream.

[Z-K-L]

It is like a bad dream. It was 2 years on Sunday since we gave birth to Kimon and it is still so hard to accept.

I wish you all the best with any future pregnancy and know that there are always people here to listen. Sometimes I don't reply but I still pop into read sometimes. Sometimes I just find it hard to write something.

Anna-Karin, thank you so much for starting this thread. It really has been a life line for me and so many other people. I can't talk to any people in real life about this and I don't know any other people who have gone through this in real life either. This group really saved my sanity.

Suburban Journalista - I'm sorry you had to lose your daughter too. It's so hard to know what to do at a time like that. If they had given me a choice I don't know I would have chosen. For me the only choice was birth so that's what I went with.

We scattered his ashes down the coast so we want to go down there next week. We couldn't go on the weekend because of work. It was so depressing working through his birthday. I kept some of his ashes in a little memorial pendant but sometimes I wish I kept all of them. Sometimes I feel like he's abandoned down the coast. I know that's totally irrational, but still...

Anyway, take care everyone.

This post has been edited by Z-K-L: 25/04/2012, 09:17 AM

[anna-karin]

Z-K-L, I am glad this thread has brought you comfort and helped you and others. The irony/wonderful thing is that I started the thread as an outlet for my own grief and then it went on to become something very special.

I know what you mean by saying you feel that your little Kimon is abandoned down the coast. I often think of my Mimmi in the Baby Angel Garden. I am so glad we chose the Baby Angel Garden, though, and not a grave as such, as I would feel guilty if I did not go there and tend to it all the time. She has a plaque on a big boulder set amongst other plaques and other big boulders with plaques in a beautiful little wooded area in one corner of a cemetery. Absolutely beautiful. Kimon knows he is in your heart, and think of how free his spirit is, having been scattered. And you still have some of his ashes. Perfect combination.

ABABA, I am glad you found the thread eventually and please don't apologise for the length of the post. This is a safe place to "let it all out" and everyone on here has been through what you have. I am so sorry for your loss of little Amelia and I can imagine how awful it must have been to have been kept waiting to see the specialist. I hope the last few weeks have been a bit more peaceful for you and that your results came back ok.

Everyone else - you are always in my thoughts.

Anna

[kirsee]

It is with a heavy heart that I have found your support thread.

Our Daughter Isobella Rose has mosaic Trisomy 18. I am at a loss as to what to do as DH is away at the moment and I won't do anything til he is back but all I want to do is cry all the time.

I have a DS (2 years) who atm is being amazing with lots of extra cuddles even though he has no idea what is going on.

Please tell me that is gets easier to bear as my heart feels like it is broken in two and I can't survive like this...

~*K*~

[whyus]

Kirsee I couldn't read your post without replying. Firstly I am so sorry, this is not a nice position to be in. I haven't posted in here for such a long time but I do understand your pain. Our daughter Elli become an angel 4yrs ago and while the pain is always with you it does change from being the thing that consumes you to still being there but with you being able to cope with life, but believe me this can take a very long time.

Please remember though grief has no time limit some days are easier than others. This forum has been such a safe place to come for lots of people with everyone knowing how you feel to some extent or another and no one will judge so please come back and have a yell anytime you need to.


Shelley

[kirsee]

I could have written GAIA's original post word for word as it is how I am feeling right now. I just had a phone call confirming that it is full T18.

I feel horrible but I don't think I would cope with the alternative. I will do the morphology scan next week with DH present so he can see everything for himself but then I am thinking the following week I will already be 20 weeks and I can't do this for much longer, knowing I am carrying my daughter to die is killing me...

~*K*~

[zord]

Hi everyone, The last year has been quite traumatic for me. Last year I m/c at 6weeks then fell preg the very next month and found out just after Xmas in Jan this year that my baby had Edwards Syndrome. I was 14.5wks and it was the hardest thing I have had to do. My ob was fantastic about it. The one thing I must say is that there is not much support for mums. The genetic counselor rang me with the news and that was the first and last time I have spoken to anyone about it. Most people have been extremely supportive and if they haven't been I am none the wiser as they haven't said anything directly to me (except one). We have been trying again since March and tested + last night. I am sitting here crying, stressing and wondering if I will be again dealt another horrible hand. Firstly will I make it to 12weeks, if I do and it doesn't have edwards will it be another chromosome disorder and if I am lucky enough to get through that will I have a healthy baby. I am lucky enough to have 2 healthy boys and feel maybe I have tempted fate too many times..... I know stress is not good but its so hard not to be when you have been through something like this as you all know. I am now 41 and keep thinking that ups the chances of something being wrong again. I feel so, so, so very guilty about what I have done. I wonder if I will be punished this time around.... I know I am lucky to have 2 healthy boys but would love a 3rd child. My husband and I don't really discuss the past which I also find hard to deal with. I don't really have anyone to talk about it to as no-one I know has been through it. Many of my friends have had mc but not T18. I feel even more guilt bc a friend of mine mc at 10wks and named her baby and I didn't do anything like that. She was posting quite a bit on fb at the time about the name amongst other things and it wasn't long after mine and the guilt I felt was enormous. Should I have done something like that.... I am now so scared that if its not Edwards my baby might have another anomaly. Does anyone know the likelihood of lighting striking twice in the same place given my age. Thanks for letting me post I sort of didn't know what else to do but wanted to get some advice. I am really, really, really scared as I am not sure I can get through another one again.
Kirsee - I found out and was booked in the following day. I felt exactly like you do, and it was a terrible time. Good luck with your decision its such a heart wrenching one and I know exactly what you are going through.

[wallofdodo]

hey zord, I am 40, and 23 weeks pregnant. We terminated a pregnancy last march (2011).

To say I was stressed leading up to the scan is an understatement. So far all is fine. The genetic councellors were really good to me, as were my GP's. I am doing shared care at the moment, and my GP is so understanding, she listens to all my concerns and has not once fobbed me off. Is totally realistic with me as well.

So find some good carers that you are comfortable with.

I have found that pregnancy is no longer a lovely innocent experience for me. It is fraught with doubt and concern. I often feel that I have too have rolled the dice one time too many. I hope with all my heart that everything is ok with this little guy. I have had all the testing I can, but the doubt has not subsided.

I have had a few other things happen in the period since it all happened, that have caused me distress(can't bring myself to talk about it yet) I have had a lot of councelling. The pain has subsided, but there is lingering guilt and doubt.

I have just realised this is my first post in this group. Not sure what my intention was, maybe I feel I can get it out there, but really just wanted to let you know you are not alone in your thinking. Hope all goes well for, as it has so far for me.

Edit, as for lightening, I was told that your risk is now double, so the age risk is 1:106, but for me it was 1:53. But everyone said the chance is slim, it is like lightening striking twice.

This post has been edited by wallofdodo: 17/08/2012, 09:14 PM

[brooklyndreamin]

Hi Wallofdodo and others.

I really feel your pain. I'm so sorry for what you've been through.

This is my first post here. While I have not yet had bad news, I have to say that as a mid forties, first time pregnant to 10 wks, woman, I pretty much take if for granted that there is a very significant chance of a birth defect and therefore, I am preparing myself for termination rather than a birth - until after the results of the CVS. It's a very bittersweet time, because I shared the grief and pain of many of my friends as they dealt with terminations, genetic abnormalities and miscarriages that are all part of the package of conception for those with fertility challenges (age related and other). I just understand that there are so many risks - I'm hesitant to even consider this a pregnancy. It's also very lonely, because I am unable to share that I am pregnant - even with my friends, because if it isn't viable, I don't want to have to explain this to too many people. I'd like to grieve privately or at least have control over who knows about my pain.

Whether it's failed IVF attempts, early miscarriages, early loss of ovulation, we struggle because we are still the early generation of women where we have both; the power and the science to make these heart wrenching decisions. But we lack adequate avenues to discuss or prepare for this trauma. Thirty-Forty years ago, many of these decisions were made for women, and women had neither the knowledge nor the choice to terminate pregnancies that weren't viable. And our Mums were less likely to discuss terminations or miscarriages. However, this trauma is now increasingly common and we probably need to be more open in discussing this pain and recognizing this as now part of the normal pregnancy-birth process. Just my 2 cents. So this forum is great.

[caad]

This post has been edited by cad2: 18/09/2012, 05:49 AM