Body Stalk Anomaly

I recently gave birth to twin girls. 20 minutes after birth one of them had died...
We had our routine 12 week scan and they thought she may have had down syndrome as the thickening of her neck was high and a blood test came back with a 1:150 chance of having it. Mind you Im only 26. So we went to the next step and had an amnio at 13 weeks and waited 3 weeks for the results - all positive. And that we were having 2 girls!!! So they investigated futher and this what they found....
She had a congenital condition called body stalk anomaly which means all her organs grow outside her body, literally, she also had kyposcoliosis where her spine is bent and hunched. She was given a death sentence from 16 weeks and we were told that she would not make it past 20 weeks. But my little girl was strong like her mummy and she kept going all the way to the end, giving life to her sister the whole way. We were given the option to terminate but it could impact her sister and there was a high risk of her being born premmie - too early to survive. We decided to keep going.
At 35 weeks and 5 days Ziahni Kavana was born 20th Jan 08 @ 4.34pm weighing 2.5kgs and 42cm long. Her little sister Jaeviana Kavani was born at 4.50pm weighing 1.6kgs and 30cms long. She never cried or even opened her eyes, but It was the best 20 mins of our lives. We buried her a week later. It was a horrible feeling, not just coz our baby was gone but coz we felt guilty about being happy about having another baby girl.
This is a very rare condition and I would really like to speak to other parents if they have ever experienced it.
Sorry this is so long.. thanks

RIP LIL JAE xxx
[Edited on 08/03/2008]

I just wanted to say how deeply sorry I am for your loss. I hope you are coping ok. I also lost a daughter a day after she was born (not due to the same condition as your daughter) so I can some what understand what you are feeling. I also knew throughout my pregnancy with her that there was something wrong but nobody could tell me what.
I understand what you mean about that being the best 20min of your life I too feel the same about the short time my little girl spent on this earth. I relive it in my head over and over.
If you ever want to chat just PM me.
Take care

Hi there, I had my baby boy James on Christmas day last year, he died two minutes later. I was 21 weeks pregas and contracted an infection, he was too young to breath, like your baby he never got the chance to cry or open his eyes. It is the most terrible experience losing a child as all your hopes and dreams go with them. My heart goes out to go and your baby. I can only hope that things get better for you and me from now on.

Thanks for listening,
Jess
RIP my Jimmy

So sorry that you have lost your beautiful daughter Jaeviana, such a beautiful name too. My little girl didn't die due to Body Stalk Anomaly but wanted to reply to you anyway.

I was told my little twin girl had stopped breathing at 33 weeks, out of the blue, no warning what so ever. 4 days later I delivered both my angel Rhiarna and my survivor Luke who will be turning 4 in May...

Rhiarna was born sleeping but the time I had with her after her birth was filled with so many memories and dreams that I cherish to this day. I don't carry her in my arms, just my heart now and I always will.

I will PM you shortly as well...

Take care and please come in and chat with us when you feel the need. We are always here.

Joey

I'm really sorry for what has happened to your baby. In March 2003 I found out when I was 18 weeks pregant that my baby also had body stalk anomaly. I knew absolutely nothing about the condition and to be honest I still don't really. My husband and I decided to terminate the pregnancy. It was one of the hardest things we have ever had to do but at the same time we didn't feel we had any other choice. Our little boy - Archie - was born two days later and we were able to hold him even though he was so small. About 2 months later we were finally able to bury him. It was a really awful time and affected our lives in so many ways and it has taken a good few years to deal with the effects - and in many ways we still are.

A year after Archie we finally managed to have a perfectly healthy little boy and he is the best thing that has ever happened to us. I understand the guilt that you are feeling - I really felt it when my son was born because I was so happy (but also so paranoid that I would loose him too). I think I've managed to move through the guilt but I do still have times when I wonder what could have been and I feel incredibly sad for Archie for him not having the chance at life. But the sadness and guilt doesn't dominate my life and I can enjoy my son without the feeling of guilt and sadness. In many ways I feel so incredibly lucky.

I've tried to find out information about body stalk anomaly and there just doesn't seem to be very much. When I met the consultant he basically said he'd never seen a case previously and any questions I had he answered in writing after the consultation. I am still left with lots of questions but I am told over and over again that it was just bad luck (the genetic tests they did came back clear). I'm not so sure. I have also had a ruptured ectopic pregnancy and 3 miscarriages - the last of which was last week. Again the doctors say it is just bad luck but at least this time they've agreed to refer me to a specialist clinic. I also have a bicornuate uterus and wonder whether that has anything to do with it. Who knows! It makes me believe that my little boy was a miracle baby and perhaps I should give up. But then there is always next time...

Really hoping you still visit this site mummy_mya!!!
I am 30wks with twin girls - one baby girl has been diagnosed with body stalk - giant omphalocele (all organs outside) and severe kyphoscoliosis (extreme spine distortion) I am constantly told by consultants baby is not compatable with life and if she doesn't pass sooner than birth it won't be long after.
It makes me so sad... Then I think I am so lucky to have another baby in there to hope for ... I'm getting very nervous about what is to come

To anyone coming across this thread in the future:

We have a website for parents who make the decision to continue their pregnancies with this diagnosis.

www.limbbodywallcomplex.net


We also have a Facebook group, link and description here:

http://www.limbbodywallcomplex.net/about-our-fa...

I hope that you find us, if you are looking for answers. We would love to support you.