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Original poster

I can't bear this uncertainty [sad]

117 replies

emkana · 10/03/2006 14:02

Some of you might have come across my previous threads.

Basically, they found at the 20 week scan that the ventricles of my baby's brain are enlarged, also that the femur was too short. Since then I've had repeat scans and an amnio (which was clear). After the last scan I was referred to the regional fetal medicine unit. The consultant there scanned me today. He found the size of the ventricles of the brain to be around 15 mm, which is borderline between mild and severe enlargement and the biggest measurement we've had so far. He also found the measurements for femur and humerus too short for dates, and too much amniotic liquid. As a result he feels "anxious" (his words) that there is a genetic problem. But he hasn't come across a case quite like ours before, so he has no idea what it could be. According to him we could be looking at anything from no to very mild problems to severe handicap. Sad
We are now going to have an MRI scan, but while that will show if the structures of the brain are okay, it will still not tell us if the brain is actually working properly. He will also do another scan in two weeks' time to review. But he said we might not know until some time after birth if there is a problem and how severe it is.

I feel totally crushed and the uncertainty is driving me insane. Our baby could be fine, or he might be so ill that he won't even survive. Sad
I didn't expect this at all today, I was so hopeful that he would reassure us because the consultant at out local hospital had said that the length of the femur had no further implications after the clear amnio, and when they scanned here they didn't say anything about the amniotic fluid.

Part of me wants to believe that the consultant today just got it wrong, but as dh said that's silly because he's an expert and experienced and knows what he's doing.

I'm having so many black thoughts, from wishing I had never got pregnant in the first place... I remember the night of conception, dh wasn't in the mood but I made him do "it" so we could get pregnant... maybe I shouldn't have.
Then fearing that my life will never be the same again, all our dreams and plans out of the window, the lives of my two dd's altered forever...
god I can't go on it's just so bad, I want to feel hope but then I felt hopeful this morning and it all went wrong, so maybe I should just assume the worst. Sad
I don't know anything anymore.

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NomDePlume · 10/03/2006 14:05

Emkana, so sorry you are going through this. Please don't blame the problems on yourself. I hope you and yours get some good news about your little one very soon.xx

Waswondering · 10/03/2006 14:12

This reply has been deleted

Message withdrawn at poster's request.

foundintranslation · 10/03/2006 14:12

Oh emkana :( Sorry you're having to go through this love.
I've got no advice but hang in there. Hoping and praying for good news for you.

Marina · 10/03/2006 14:13

Echo NdP. Please DON'T be hard on yourself Emkana (I can remember being distraught that I jumped a flu-ey dh the night I conceived ds2, who was stillborn, and wondering if poor health at the time of conception doomed our child...:() and please DON'T blame yourself.
I wish there was something one could say to help with the uncertainty, but there isn't, I know. Just thinking of you and hoping for the best. Mumsnet is full of people who were given uncertain prognoses, and whose children have given them so much happiness from the moment they were born.

HappyMumof2 · 10/03/2006 14:15

so sorry, no advice, but sending my love and prayers to you Sad

expatinscotland · 10/03/2006 14:15

Em
Many (((HUGS)))!

Don't know what to say, but would also like to bump this for some of the genetic experts on the board.

wools · 10/03/2006 14:18

I'm so sorry Emkana that you are having to go through this. It must be a terrible worry for you. Thinking of you at this difficult time

NomDePlume · 10/03/2006 14:20

Marina, me too. My first DD was unplanned, I was 17 and spent the first 12 weeks wishing I'd miscarry (really horrible I know). Things changed and I came round the idea of having a baby, started to get excited, y'know. When I was told that there were no signs of movement or heartbeat at 25 weeks I immediately blamed myself, hated myself for 'getting my wish' (as I saw it at the time). She was the size of 24wk so there is no way of knowing whether she was just a little small or if she had been gone for a week prior to the scan, (she never was much of a wriggler). She was delivered a few days later at 26wks.

It's really hard to thinkstraight about this when you're going through it but it TRULY is not your fault. There is nothing you could've done to change the health of your baby. I have everything crossed that he is born healthy and happy in 20 weeks time. Huge hugs, emkana.

RnB · 10/03/2006 14:21

Oh Emanka, I am so sorry. What a horrendous time you must be going through. I hope you will soon have some answers Wishing you all the best x

Marina · 10/03/2006 14:24

NdP :( :( :( how absolutely dreadful for you, I am so sorry.
Emkana, we are all with you here and thinking of you. I hope some of the other Mners who were scared badly by scan results but ultimately had healthy babies will see your thread and post their encouraging stories. I know Blu for example, was given a lot of angst over BoyBlu before he was born. And now he wears purple coats and sings and dances...
Lots of love XXX

Marina · 10/03/2006 14:26

Yes, and we need our resident geneticists to pop along EIS so let's keep bumping.

expatinscotland · 10/03/2006 14:27

I'm so sorry for your loss, too, NdP. I also had an unplanned pregnancy and by the time I came round and got over the shock, I, too, lost the baby.

Em, I'm sooo sorry you are having to go through this and wish you could find some answers soon.

expatinscotland · 10/03/2006 14:28

Snap, Marina! Let's hope one of our brilliant scientists is out there reading.

NomDePlume · 10/03/2006 14:28

Thanks Marina

Where's that lovely tamum ?

Scans are NOT conclusive, you could be worrying over very little. Let's get some good news stories on this thread, eh ?

NomDePlume · 10/03/2006 14:30

Sorry, emkana. I told my story to illustrate that I understand how easy it is find fault in yourself when this sort of news comes your way. Didn't mean it come out in a poor me fashion, to extract sympathy fom other posters, but thanks guys. xxxx

expatinscotland · 10/03/2006 14:30

Bumpity bump.

Hausfrau · 10/03/2006 14:31

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getbakainyourjimjams · 10/03/2006 14:38

emkana- sorry to hear all this.

I don't know someone who went through similar (refused to have an amnio- but all the scan results were not good) and the baby was fine. I also think that medics tend to give you the worst case sceanrio- or at least seem to feel they have to spell that out to you- I suppose they do, although often it just leads to unecessary worry.

Is it helpful to assume the worst? I don't know. We've known from the day ds3 was born that he's a high risk (1 in 20?) of being autistic- and given our history I guess high risk of never living independently, and age 14 months I still can't tell. I have moments of panic, but I actually think the most helpful thing you can do is just not think about it, but just know that if the worst happens you will cope. I don't think you need to try and prepare yourself because without knowing for sure that anything is wrong you can't anyway.

Don't worry too much about your two dd's -even if their sibling does have SN they'll be fine. Sure they would lose out in some areas, but they would gain in others.

TBH I wouldn;t even think about that though because you don't know.

Uncertainty is worse than knowing, so concentrate on dealing with that- by ignoring it, and forget all the what ifs- that's all they are and you can do that about anything (since dh changed jobs and has to dsrive every day I do a what if he crashes the car every day!)

dinosaur · 10/03/2006 14:47

Emkana, I'm one of those who had a worrying scan etc but a baby who turned out fine - DS2 had "soft markers" for Edwards Syndrome, and indeed was born with talipes (clubfoot) but was otherwise absolutely fine and dandy. I do so so sympathise with what you are going through though, as I nearly went insane with worry about him and what would we do etc etc.

It is very hard to cope with but I think that jimjams is right - the only approach is just to take the rest of the pregnancy one day at a time and try not to fret over what the future may bring. It is veyr very hard though.

Best wishes to you all.

xx

Original poster
emkana · 10/03/2006 15:44

Thanks all for your messages. It means so much to me to know that there are people out there who care.

I think I will keep bumping this in the hope that somebody knowledgeable in genetics will come along.

I'm quite proud of myself, I picked dd1 up from school and told two of the mums about today and managed not to cry.

OP posts:
Original poster
emkana · 10/03/2006 16:15

bump (sorry I'm going to be a bit impatient today)

OP posts:
expatinscotland · 10/03/2006 16:20

Bump

alexsmum · 10/03/2006 16:21

bump

alexsmum · 10/03/2006 16:28

lets keep this bumped up

wools · 10/03/2006 16:29

bump

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