I can't bear this uncertainty [sad]

[emkana]

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.
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.
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.
I don't know anything anymore.

Glad you had the MRI. It sounds as if you are already seeing a very senior consultant, and I suspect he can't tell you more because the technology they use is limited. I think its reasonable to ring up and ask if they've seen anything before 24th. They may want to not say much until they have the time at an appointment, especially if the MRI result's don't show anything conclusive.

At the next appointment I think it mught be worth asking if they plan to follow your baby after he/she is born. Sometimes ante and post natal care doesn't coordinate that well but if they give you a bunch of could be this could be that it's not fair to just dump you after birth.

emkana, glad you've had an MRI scan (I didn't even know they could do those in pregnancy) - the 24th does seem a long time to wait, I would ring too (they will understand how anxious you are).

D'you know, you were the first person I thought of when I woke up on Saturday morning - like everyone else here I really am hoping for a happy outcome to all this worry.

Oh sorenlorensen that is so kind!!!

Most of the time I'm feeling surprisingly positive, with thoughts ranging from "It will all be fine" to "No matter how ill he is we will love him and we will cope"

but then I have some very bad moments where I just feel so sad. It just wasn't supposed to be like this.

Yes, my consultant was very good indeed. I think I significantly boosted our local florist's profit margins after DD's birth!

We're in the north-west, by the way.

I didn't actually have many more scans after the MRI confirmed that DD had agenesis of the corpus collosum, as the MRI explained why her ventricles were enlarged. I had a scan quite late on to make sure that her head wasn't getting too big to make a natural delivery dangerous, but that was about it. I just saw the community midwife and the counsellor. I was induced at 38 weeks.

We were also referred to a paediatric neurosurgeon who talked to us about the condition and about shunt operations.

Following on from jimjams' post about post-natal care, we had a paed in the delivery room and DD was taken to SCBU straightaway so they could see how she was. It's the policy at our hospital that all babies who spend time in SCBU are given follow-up appointments with the neonatologist at the hospital. He referred us to a neurologist and to eye and ear people.

I don't know if it will comfort you to know that I feel even more love for my DD having gone through such an awful pregnancy and "oommitted" to her when we didn't know how she would turn out. A real "for better, for worse" kind of feeling.

I also called a counsellor at LIFE as I didn't want to talk about late termination but wanted a more positive slant on the situation. They are experienced in talking to people who are concerned about their beby's health. So long as you go to them knowing that they have a pro-life agenda, they are extremely kind and helpful.

Don't forget that you have ruled out chromosomal abnormalities so my understanding is that that cuts a very wide path through the scary possibilities out there. You actually sound as though you are being much braver and stronger than I was

emkana, thinking of you and hoping for you ...

Thinking of you too emkana. Agree with the others about trying to get some information sooner than the 24th - which would be a very long time to wait.

emkana - didn't know you were going through this. Sending you my very best wishes for a good outcome for you and the family.

thank you joolstoo

Still thinking fo you too emkana, waiting with baited breath for the happy ending xx

Oh emkana,
I've been following your threads through for ages but hadn't posted. Several times i typed messages but they seemed so inadequate. Sorry. I was too wrapped up in my own struggles with my pregnancy. but wanted you to know, you have been frequently on my mind and just to say that I'm thinking of you and wish you all the best - for good news and a very happy ending.

love ruth X

I'm the same too, I'm so sorry your going through this terrible time. My daughter goes to Gloucester royal quite often, and we have only had first class service from them.
Thinking of you xx

Thank you

I'm going back to the fetal medicine unit on Friday for yet another scan - will update then.

Best of luck to you, Em!

Best of luck Em. x

Thinking of you em. Best of luck for friday, our prayers will be with you. I know it's hard but try and be positive, you don't want your baby feeling your anxiety.

Emkana

Best wishes all the way sweetheart, what a nigtmare.

FWIW my friend has been havingb scans at Gloucester Royal for a non PG related condition; the results take ages but she is very happy with the hospital indeed.

All hospitals vary between consultants etc; the place I had DS2 was rated 0 in the l hospital scores (Weston) but it was the best birth of all three.

Good luck