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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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Original poster
emkana · 12/03/2006 19:56

Thank you all again.

Do you know, the only time I cry is when I read your kind messages, otherwise I hold it together pretty well. But in a way it does me good to have a bit of a cry sometimes.

OP posts:
tegan · 12/03/2006 20:35

Did you have the scan on Wednesday at Gloucester Royal? if so go with the results from the other place as the royal aren't great at getting things right.

milward · 12/03/2006 20:38

emkana - I've been through tough times with antenatal tests - just to send support to you xxx
Take care of yourself xxx

bunny3 · 12/03/2006 20:40

I wish you all the best for tomorrow. My fingers are tightly crossed for you.

Marina · 12/03/2006 20:44

Very best of luck tomorrow emkana. We'll be thinking of you XXX

Yorkiegirl · 12/03/2006 20:45

good luck tomorrow emkana

Hausfrau · 12/03/2006 20:46

This reply has been deleted

Message withdrawn at poster's request.

Nbg · 12/03/2006 20:49

Good luck for tomorrow emkana.
I hope you can get all the answers you want.
x

hereshoping · 12/03/2006 21:03

Just wanted to add my last pg they picked up a soft marker at the 20 week scan wnich could be indicative of downs or cystic fibrosis. we declined amnio but then had an anxious wait throught rest of pg with numerous scans and measurements which i drove myself mad with worry over the millimetres differences between different scans. suffice to say it all turned out fine and my baby is 12 weeks and absolutely gorgeous.
Im medically qualified and the way i kept sane -ish was to keep reminding myself that obstetrics is a high risk profession for being sued in and that noone in it will EVER promise you a normal baby - even if everythings going fine. I felt everytime i went for an appointment it was all doom and gloom but noone ever said theres definetely something wrong or its definetely Ok.
There was counselling available from our fetal medicine centre which I didnt use but could of. One of the sonographers also said to me that the scans are so sensitive nowadays that they pick up miniscule differences which nobodys certain of the significance. Certainly my friend who is a neurologist and orders a lot of brain MRIs would agree with this - you can always find something on an MRI that youre not sure is normal or not even if the patient has no symptoms whatsoever.
My babys growth scans suggested she wasnt growing properly even though to me it looked like she was going to be long and skinny like my others - and she was. A friend also had a baby who they kept measuring the femur length of obsessively telling her worse case scenario the baby would have dwarfism - but he was born fine and has shortish legs in proportion to the rest of him - exactly like his dad
sorry this is a ramble but hope some of it is some use. good luck for tomorrow

alexsmum · 12/03/2006 21:06

emank, i haven't posted before for fear of saying something crass or silly, but just wanted to say that i am thinking of you and sending you love and best wishes.Please take heart from other peoples experiences-where it has all turned out ok.
x

Original poster
emkana · 12/03/2006 21:38

Thank you all .

Tegan - why do you say the Gloucester Royal isn't great at getting things right?

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Blu · 12/03/2006 21:41

Emkana - my thoughts with you tomorrow.

mrsdarcy · 12/03/2006 22:18

Thinking of you for tomorrow Emkana. When we had our MRI we were shown the scan pictures within the hour and told what they showed, but not the implications of it. We had an appointment with my obs. consultant later in the day for that.

The most sensible thing we were told about the MRI was by a paediatric neurosurgeon who said that although we knew DD had an abnormal brain scan they wouldn't treat the scan but the baby, if she needed treating.

If all the people who have posted on this thread had scans as detailed as the ones your baby is having, how many of us would come out as completely "normal"? Deviations from the norm don't always, or even usually, mean anything bad.

The other thought that consoled me was that the measurements you are concerned about are TINY, so the margin of error is correspondingly huge.

I hope you can get a nice counsellor to help you through the rest of the pregnancy Smile

Original poster
emkana · 12/03/2006 22:22

Thanks mrsdarcy

We were told that the MRI scan pictures would take a while to develop and evaluate, so wouldn't be able to take about them until some time later Shock

I'm beginning to feel that things aren't exactly going the greatest way where my care is concerned. No counselling offered either...Sad

Tegan saying further down that Gloucester Royal gets things wrong has actually worried me now as their scan measurements were more reassuring. Sad

OP posts:
foundintranslation · 12/03/2006 22:26

Will be thinking of you tomorrow emkana.
Do ask for counselling. You need all the support you can get right now.
Let me know if a treat occurs to you that I could send you.

Heathcliffscathy · 13/03/2006 10:19

thinking of you today emkana, hoping you get some reassurance of some kind.

Saggarmakersbottomknocker · 13/03/2006 10:21

Been thinking of you Emkana.

alexsmum · 13/03/2006 10:41

good luck for today emanka-thinking of you
x

fenny1 · 13/03/2006 14:56

Everything crossed that they give you some news that calms your mind. Good Luck x

Original poster
emkana · 13/03/2006 16:37

Thank you for your thoughts.

Did the MRI scan today, was very claustrophobic in there. Unfortunately no result yet. We might not find out anything until we next see the consultant, which will be on the 24th. He did say he might phone beforehand if he knows anything, so we'll see.

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blueteddy · 13/03/2006 16:53

Fingers crossed for you.

morethan1 · 13/03/2006 17:42

This reply has been deleted

Message withdrawn at poster's request.

Original poster
emkana · 13/03/2006 18:49

The thing is that this was already a second opinion, a different consultant after the one I had seen at my local hospital.

But I've been pondering whether to say anything, because the scan measurements were so different between the two scans I had last week as well.

Trouble is that I'm worried I might burst into tears when phoning. Sad

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mrsdarcy · 13/03/2006 19:05

Hi Emkana, I'm glad the MRI is over with.

Would it be worth pushing for the MRI results sooner than the 24th? As I mentioned earlier, we waited for about an hour whilst the pictures were processed and the consultant radiographer looked at them, then he brought us over to show us his findings. Then we crossed the city to the hospital where my obs consultant was based, carrying the pictures (the radiographer phoned her in the meantime to discuss it with her) and shse was able to talk us through the results. It was a gruelling and exhausting day, but infinitely prefereble to having it hanging over my head.

I assumed they were expediting it partly because my obs consultant is wonderful and has a good working relationship with the radiographer, and also because they can terminate so late for abnormalities that there was a medical reason for expediting.

Original poster
emkana · 13/03/2006 19:07

I might phone tomorrow or Wednesday and ask when I could get the results. Waiting until the 24th seems very long?

whereabouts are you, mrsdarcy? Sounds like you were very lucky with your consultant.

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