Hoping for the best but fearing the worst!

valdonnelly · Joined: 27 Jun 2009 Posts: 11

Had my 12 week scan last Tuesday and after a two-year wait for number 2 and fertility drugs was delighted to see a baby kicking and moving in my womb. When the sonographer mentioned a problem with the cord and went looking for a second opinion I wasn't even really that troubled until the full story was explained. Two days later we were off to the Women's Hospital in Birmingham for another scan. It revealed that our baby has a small omphalocele large enough to contain its bowel and liver. Now I have to wait until the 16th July for a fetal echo and amniocentesis. The odds for trisomy 13/18 is 1:3 and trisomy 21 is 1:15 and I am terrified. How will I cope if this baby dies or is born badly disabled? I just keep crying and can't seem to focus on anything else. I hope to return to school this week but don't know how I will pretend that all is okay. The wait seems endless.
Just thought I would share my story in the hope someone out there can relate.
Val

janie · Joined: 16 Dec 2007 Posts: 241 Location: North of England

Hi Val,

I hope that I can help a little. My daughter, Anna, was born in 2005 with an exomphalos/omphalocele, and I well remember the torment I was in when it was diagnosed. It is an awful, shocking thing for any parent to experience and I hope that Geeps can make you feel less alone. We have many members who have happy, healthy children who were born with exomphalos and I dearly hope that you will be one of them.

I know that your focus now will be on the possible chromosonal disorders. If you want to talk to someone other than your doctors about this then the charity ARC (Antenatal Results and Choices) come highly recommended and they have a support line: http://www.arc-uk.org/ I am pretty shocked that you have to wait for the 16th for your echo and amnio - that seems like an awfully long wait.

By the way, please ask any questions you want. We are very friendly! If there is something that you would prefer to ask off the open board then just seelct your chosen member/s from the memberlist link above.

I am sending you an enormous virtual hug.

Janie xxx

sarah · Joined: 22 Feb 2009 Posts: 43 Location: Adelaide, Australia

Hi Val

Congratulations on your pregnancy, I know exactly what you are going through at the moment as do all the other lovely people on here, just keep positive and try to keep your spirits up. I know it is all you can think about and I remember feeling like all you are doing is crying and asking why me???? There is plenty of hope for you precious one, read through all the posts on here, I found that it really helped me, in fact I still sign on every few days - its a real support.
Sending you loads of positive vibes and support,
Love
Sarah

lottie · Joined: 21 Jan 2009 Posts: 110

Hi Val,

As the others have said, pleae read other peoples accounts... exomphalos is not the end of the world.. infact these days its very manageable... obviously we are all women who are having /have had babies with exomphalos and are testament that all hope is not lost!

It seems as if the whole world has fallen apart right now- i still remember... but i promise it does get better.

we're all here if you need us... the wait does indeed seem endless but unfortunately something we've all had to endure. i was the same... i had to wait a few weeks for my amnio as my placenta was at the back so cvs was not possible... the wait is agonising and then you have to wait for the results... you will find there's a lot of waiting and uncertainty but every pregnancy involves uncertainty unfortunately! but there is hope... lots of it!

Please read the others accounts... try not to go off looking on the internet at things as often these are outdated and sensationalised... you're best off staying here and reading what you can. Remember no case is the same...as is the diversity of humans... each baby is different and individual too.

Take Care and please keep us all updated and again dont hesitate to ask anything or contact any of us privately! Smile

Much Love to you and your little one Lottie xx

Claire · Joined: 19 Dec 2007 Posts: 117 Location: Worcestershire

Hi Val

Many congratulations on your pregnancy and welcome to GEEPS. We can all relate to how you are feeling and empathise greatly. It is agonising having to wait for the results.

As Janie has said, I am surprised that you have to wait so long for tests. I found out my son had an exomph at our 12 week scan and I had a CVS that day. The initial results came back after one working day. Did they give you a reason for having to wait?

Please ask us any questions you have. Whilst everyone's experience is different, there are lots of good news stories on here and plenty of hope.

Claire

Mum to Seth, 3 years old, repaired exomph

Jimmy & Gill · Joined: 05 Mar 2008 Posts: 61 Location: Herefordshire

Hi Val,

Congratulations on your pregnancy - so sorry you are having to go through all this. Everyone on this site can relate to everything you are experiencing.

Our daughter was born last May at Birmingham Women's Hospital with a large exomphalos containing bowel and liver. I too am really surprised at how long you are having to wait for an amnio and echo. It is such an important first hurdle. We found the Fetal Medicine team at BWH to be really good. If you haven't already you should make contact and push for an earlier date - you shouldn't have to live with that anxiety for so long.

Wishing you the best of luck and if there are any specifics about care in Birmingham (or anything else), we'd be happy to help.

Jimmy

rll · Joined: 03 Nov 2008 Posts: 45

Hi

I just wanted to say about the wait for amniocentesis. We were offered either CVS or amnio. Amnios as i understand it have to be done from 15/16 weeks or so onwards and can't be done before explaining the wait but CVS can be done earlier. I can't remember why we opted for amnio - I think the odds of a miscarriage are 1% and CVS is 2% which is probably splitting hairs but I think that was to do with it and also the amnio results in our case would have been back as quick for the quick fish test as the CVS results took a couple of weeks, by which time we could have the amnio and get the first results back...that was in Preston prior to being referred to Manchester for the rest of our journey. I would suggest just checking with your team what can be done and when so at least you have the chance to know things earlier

Ruth

valdonnelly · Joined: 27 Jun 2009 Posts: 11

Thank you all for taking the time to reply to me. On reflection we had said to our consultant that we would not act on any results and that is why he steered us towards amnio where the chances of miscarriage drop from 1 in 75 to 1 in 100. What l didn't fully appreciate at the time was the time difference between the two types of test. If I had had the CVS test done when we saw him last week I would know the results for trisomy 13,18 and 21 by now. I am going back to Birmingham this afternoon and can have the test done if l wish. I just feel that it would end this agonising wait. My life is completely on hold!
Thank you again
Val x

janie · Joined: 16 Dec 2007 Posts: 241 Location: North of England

I hope that it all goes well, Val. I found my CVS test very straightforward.

Janie xxx

valdonnelly · Joined: 27 Jun 2009 Posts: 11

Some good news will our first results on the CVS coming back clear. Now we wait for the rest of the results and the fetal echo on Thursday. I think we are over the initial shock and are trying to be positive but we know we are not out of the woods yet.
Wishing the very best to all families out there coping with a baby with an exomphalos.
Lots of love Val xx

Claire · Joined: 19 Dec 2007 Posts: 117 Location: Worcestershire

That's great news, Val. A very big tick in the box!

Claire
x

janie · Joined: 16 Dec 2007 Posts: 241 Location: North of England

Fingers crossed for Thursday.

Jnaie xxx

sarah · Joined: 22 Feb 2009 Posts: 43 Location: Adelaide, Australia

Wonderful news, good luck xxxxxxx

valdonnelly · Joined: 27 Jun 2009 Posts: 11

We've jumped another hurdle with the fetal echo going well yesterday. The cardiologist seemed quite happy with the limited view he had but obviously said he would know more at the 20 week scan. There was no sign of the leaky valve they spotted at 12 weeks. She didn't want to help in the slightest though. She was lying in the wrong position and only moved after a 20 min power walk round the car park and then started teasing them by putting her arms in the way. I don't think I could blame her after three scans in one morning! Anyway still waiting for remainder of chromosome results but starting to feel that all may be well. Thank you for all your well wishes. They are very much appreciated!!
Val xx

lottie · Joined: 21 Jan 2009 Posts: 110

H val...

hows it all going? xx