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Hello everyone Lock Rss

Hi everyone

It has been a long time since I have been on here, I have read a little bit, and I hope you are all doing okay.

Our explanation of my beautiful Rori being still born at 36wks was - no explanation. But I found out from all the blood tests after I had her that I have this gene "mutation" called factor V Lieden. I was wondering if anyone else has this or has heard of it. I don't know to much about it, but apparently it can cause pre eclampsia (which I had with my first daughter), and unexplained still birth and miscarriage. So now I am extra worried about becoming pregnant again.

Also, it has been almost 12 weeks since I had Rori, and while at first I was coping fairly well, the last few weeks everything has been getting tougher, I am feeling more sad. Has anyone else ever experienced this? I wondering if its because it is getting closer to Christmas and stuff, or what. I don't know, all I know is that my heart hurts a lot.

I had my two nieces over the other day, and one of them is 6 weeks older than Rori would be, and I was watching Ava (my DD, who is almost 2), with the bub, and she was so good to her, and it made me so sad. I also get sad when I think about how she should have a sister that she would be able to play with soon, and she hasn't got anyone. Yeah, it all just sux.

Anywho, sorry for venting. Hope you can forgive me.

Ava May 18/11/05 & Rori Elaine (stillborn) 6/8/07

Hi Em
I know what you mean about feeling worse when everyone tells you time makes it better. I have been trying to figure this out myself, I know our situations are different but the pain of loss is still there.
anyway I think its because you know exactly what you would be doing if you had Rori with you today, its like I have said before its the "Would Haves" that really hurt and time never seems to fix this.

I know that probably doesn't help but you asking that same question that has been going around in my head made me want to answer you.

I don't know about you but time seems to be my enemy, the only thing I can say that might make sense is the amount of days you feel remotely happy or normal become more and the sad days become less, but when you do get sad it seems more intense?

Sorry about all that, I hope that it helps in some sort of way. hmm listen to me I have rambled again.

I hope you feel better soon


I forgot, the factor V Lieden gene is on John's side of the family, his sister lost her little girl at 21-22weeks a few years ago. She was told that it was most likley the cause, then she had a lot of blood trouble when she had her other two kids, with her little boy her blood went really thin then with her little girl she got DVT in her leg and now has to keep a close eye on it. I don't think there is enough information around about it. I would go and talk to your doctor about it, John's sister had two perfectly healthy babies after her loss, she spoke to her doctor and he gave her a lot of information about it, he even told her to get her family tested to see if they have the gene as well I think John's brother has it but John didn't want to get tested so I don't know if he had it.
Hmmm rambling again, hope that helps


Hi Em
I'm sorry that I dont know anything about V Lieden, so I cant offer any advice there. I can relate to your other comments about everything being tougher over the last few weeks. I lost my litte girl on 26 July this year. It will be 13 weeks this Thursday. Sometimes I think I am coping ok but then other times I am a complete mess. Its the small things that seem to get to me. Being at work, where I received the call from the doctor, seeing pregnant women, thinking that should be me, seeing young babies and how Emma interacts with them, and also (as you said) that Emma should have a sister that she should be able to play with and she has got one. I don't have any words of wisdom, other than I understand what you are going through. I agree it just sucks. No other words for it. No parents should ever have to bury their babies, its just not fair.
Take care

hi there,
Firstly i would like to express how sad i am to hear of your loss, there is nothing i can say to make things better but i feel very much for you right now!
I had to make a decision at 20 weeks to terminate my pregnancy due to an agenesis of the corpus callosum -this is where the substance in the brain which allows the left and right hand side of the brain connect was absent which obviously results in a severly handicapped child and a high possibilty of death shortly after birth, anyway the point is i knwo what you mean about the beggining of the grief process- i was numb, for the first two months or so, i pretty much tried to keep positive and pretend like it was a small hurdle and ill move on soon enough, this didnt hold up for very long, soon i became very depressed, and cried alot, seeing other babies tore my heart out and i felt very angry with the whole situation, from the start i had done all the right things eaten right,no smoking or drinking, exercised etc i felt it was a great injustice that i am suffering a loss when there is women out there who do all the wrong things and end up with healthy babies they dont care for properly- i found i would cry over the photos of Grace multiple times a day, i would write pages on how i felt, i would take days off of work and worst of all drink to numb my pain- this was due to a poor support network around me, my partner wouldnt talk about it, his family shied away from it and my family lived far away- physical contact offers much relief from your pain. Make sure you talk to someone is all im trying to say,i hope you have great support and dont be afraid to reach out to them, even if its just for a hug and cry on someones shoulder for 5 minutes, try not to blame yourself and vent whenver you feel the need, its necessary, this pain is deep and its not going to go away soon, there will be days when you feel like you cannot take anymore pain, but make sure you reach out to someone, keep talking about it- trust me its been 3 years now and the pain is still there, and new pregnancies bring the fear of god back to your heart, but you will get to a point where you will go days where you may no think about it and when you do your pain is slight compared to what you have been through - if you need to talk you can email me and i will talk it out- there is nothing worse than being alone right now. take care!
Em I am so sorry for your loss. No one should have to go through this pain, it isn't fair. We lost our little boy twelve weeks ago also at 39 weeks. I had all those blood tests as well but they didn't find anything. I don;t know if that is good or bad. It means that there was apparently no reason for what happened, it just happened? Sometimes I think if they had found something they'd be able to prevent it from happening again.
I know what you mean about Christmas. This Christmas was supposed to be special. Our first Christmas with our little bub. We have decided that it is just too sad and that we aren't interested in CHristmas this year. I don't know if that is healthy or not? I usually love Christmas and putting up the tree and decorating the house, but not this year. We will go to family lunch but that is all. Everything is a reminder of what we should have. I am sorry you are finding it harder as time goes on. Little Lucas is always on my mind and I do find that some times are harder than others. I have just decided to take a week off work cause I am finding it all a bit too much at the moment. I know tht nothing I can say can take away any of your pain, just know that you are not alone and that you are in my thoughts. I hope you find some happiness soon.
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