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Original poster

Anomaly scan today - fluid on the brain

42 replies

PenfoldsGlasses · 29/07/2010 19:42

I wonder if anyone has had experience of this.

I had my anomaly scan this afternoon - they told me I was having a boy and that all his major organs are fine. The consultant kept looking at the head and got a sonographer to
confirm that there was fluid on the brain.

He explained that is was a symptom of Spina Bifida but both of them checked the spine and it looked perfect. Also the baby was bouncing around and waving his arms and legs.
We have another scan booked for next Tuesday with a specialist.

Our son is a miracle to us - he is the result of IVF after four miscarriages.

We are upset but trying to keep it together
and our son will be loved no matter what.

Has anyone else had experience of this?
Thank you in advance.

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cardamomginger · 29/07/2010 20:24

No experience of this, but didn't want your message to go unanswered and wanted to bump it up. Hopefully someone who does know about this will be along in a minute.
Feel for you so much. Big, big hugs. XXX

sarahmia · 29/07/2010 20:26

no experience of this at all, but i wanted to just give hugs and say that i personally know so many people who have had scares of the similar kinds and have healthy happy children now. There is always hope and faith xxxxx

Original poster
PenfoldsGlasses · 29/07/2010 20:30

Thank you both cardamomginger & Sarahmia

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Madasajarofwasps · 29/07/2010 20:32

penfoldsglasses I don't have experience, sorry but I just wanted to wish you all the best for you next scan. You must be worried sick. All I can say is that some of these problems do resolve themselves. My daughter had a potential kidney problem picked up at a scan and when they rescanned later it had resolved.

I hope someone with experience of this will come along to reassure you soon. did the consultant elaborate any more on what could be the cause?

Original poster
PenfoldsGlasses · 29/07/2010 20:40

Hi Madasajarofwasps

The consultant checked the whole of the body but kept going back to the head - he told us he was telling the worst case senarios of Spina Bifida or a chromosome issue but the other sonographer said it maybe just the case that it could be stents are required after he is born.

I head is all over the place and google is scarying the life out of me.

Thank you
x

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Madasajarofwasps · 29/07/2010 20:45

Oh please don't Google you will frighten yourself silly. Please try not to worry too much, see what the scan on Tuesday shows - the waiting must be horrible.

Take care and please let us know how you get on xx

Original poster
PenfoldsGlasses · 29/07/2010 20:53

Thank you xxx

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rockbudgie · 29/07/2010 20:53

Nothing helpful to add I'm afraid except very best wishes and hope it turns out to be nothing serious. And for goodness sake stop google-ing - it won't help and will only make you worry more. Try and relax until you know what you are dealing with. Good luck x

Original poster
PenfoldsGlasses · 29/07/2010 20:58

thank you Rockbudgie my DH is talking to the private clinic that I had my IVF just now to see if we can go for a scan there for a second opinion.

Thanks again xxx

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scgd · 29/07/2010 21:40

Hi PenfoldsGlasses,

Have no experience of your baby boys potential problem but i do know how you're feeling as a problem was also picked up at my anomaly scan. we are also having a little boy and the scan picked up an issue with one of his kidneys. we're being scanned every 4 weeks and a few scans later everything is still consistant with the first but he's doing very well, like you all his other organs appear fine, and he's gaining weight like there's no tomorrow (a bit too much if you ask me, dont fancy the idea of giving birth to a giant baby, he's gained 2lb 5oz in last 4 weeks!) i would also suggest that until you've been given a name of what the problem is, dont read up on anything. and when you do have more info, do your research but dont get carried away, as knowing too much is also a bad thing. also, like we've been told, you wont know anything for definate until he's actually here. look after yourself and keep us posted if you can X

Original poster
PenfoldsGlasses · 29/07/2010 21:54

Hi scgd thank you for sharing your son's story - I am delighted he is gaining weight - that as to be a good sign!

What you have said rings true - nohing is definate until he is here.

Take care xxx

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Rolf · 29/07/2010 22:09

So sorry you are going through this.

When I was expecting my DD we were told she had ventriculomegaly (enlarged ventricles). After a foetal MRI we were told that it was caused by a condition called Agenesis of the Corpus Callosum. We were referred to a paediatric neurosurgeon who told us there was a possibility of hydrocephalus, and talked us through shunt surgery. We were told about a range of dreadful worst case scenarios. They are the ones that stick in your mind, not the "or of course the baby might be just fine".

The most helpful thing the neurosurgeon said about a shunt was that with a shunt, the baby would be whoever/whatever she was going to be had hydrocephalus not happened, iyswim. It helped me get some perspective on it.

DD is now 5. She has finished her reception year in primary school. She is developmentally completely normal, and was discharged by the neurologist when she was 12 months old.

When I became pregnant again, I told my consultant to "keep her soft marker bollocks to herself"! My consultant did all my scans herself as I told her I only wanted to know about problems that affected the mode of delivery, or which required treatment for the baby.

I know this isn't were you are at now, and at the time all I could think about was how I was sure that we were the family for whom it would all go horribly wrong.

After the awful strains of the pregnancy, once DD was born I went round with the biggest smile on my face. It don't think I stopped smiling for about a year.

I know how hard it must be for you to relax and enjoy the pregnancy, but if you can find any techniques that help, do use them. Looking back at photos of me before DD was born, I look awful - so strained and worried. In my next pregnancy I found hypnosis a very good way to relax and bond with my baby. Do you think that would be helpful?

Original poster
PenfoldsGlasses · 29/07/2010 22:21

Hi Rolf thank you so much for this, What a lovely story - it may just get me to sleep tonight.

Re: the hypnosis - did you have this in a personal session or was it by cd?

xxx

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chivichanga · 29/07/2010 22:43

When I was scanned they found a large fluid-filled cyst in the baby's brain. We were very worried but they monitored it every month or so and it got smaller and smaller and eventually disappeared...that baby is now a strapping 14-year-old rower. So do not lose heart!

Original poster
PenfoldsGlasses · 29/07/2010 22:47

Thank you chivichanga that made me smile - I pray my little one takes after his rugby player Dad!

xxx

OP posts:
Rolf · 29/07/2010 22:54

I had an independent midwife come to the house to train me in the techniques. She did 3 sessions ante-natally, and with each session gave us a CD with the "script" she had used. The first CD was to use during the pregnancy, and was lovely and relaxing and included sections where you bond with your baby. The other 2 are more specifically for labour. The group sessions weren't convenient for me, and I know that when I was having DD I avoided other pregnant women like the plague!

I can give you the details of the MW who trained us, if you like. She was based in the NW but is now in London. Or I can send you the CDs is you like. There are other CD packs out there that are supposed to be good, too. I went totally to the non-medical extreme after that horrible pregnancy. I saw a homeopath and got a remedy to help with my panics. I had reflexology which was very relaxing. I got a doula. Went the whole hog!

Do let me know if you'd like any more information . Given that you are committed to continuing the pregnancy (that's how I felt, too), there is nothing you can do about your baby's chromosomes or anatomy, but there is a lot you can do about your own state of mind, and if you keep yourself sane and healthy that can only help your baby. If I was to go through my pregnancy again I'd distinguish between the things I could control and those that I couldn't, and focus on the former. Your head will be full of pregnancy stuff, even more than in a straightforward pregnancy, so fill it with things that make you happy. Don't be scared to bond with your son during this pregnancy (I was and it was awful).

To some extent, you don't have to be a medical "case" if you don't want to be. One reason I continued to have lots of scans was to see if the baby's head became too big for a vaginal delivery to be safe. But if you're offered scans for reasons other than your safety or the baby's safety, think carefully before deciding whether you want to have them.

Worryworry · 29/07/2010 22:57

Hi
so sorry to hear about your worries. I too had several miscarriages then conceived by ivf. Our dd was born prematurely and had "bright areas" in brain scans. We were told this could lead to slowness down one side of body and other developmental problems. Touch wood she's a bright baby, although bit slow at walking.
What I'm trying to say is don't think the worst. It may all be alright. Don't google anything, it only makes things seem worse.
God bless and watch over you and your little one.
Try and distract yourself by Reading, watching films, chatting or whatever works for you.
Big hugs and blessings.
S

Original poster
PenfoldsGlasses · 29/07/2010 23:03

Thanks Rolf im in Scotland so not near yur former midwife although I think that concept sound brilliant.

I would be interested re: cd's - how could I contact you - are you on CAT?

I really appreciate you sharing your story xxx

OP posts:
Original poster
PenfoldsGlasses · 29/07/2010 23:10

Hi Worryworry - thank you.

Im so pleased your daughter's future is going well.

I thought our heartache and worry after the miscarriages had lessened when we saw this bouncing baby at previous scans and even today it wouldnt behave for the consultant.

I could never terminate after seeing and hearing the heartbeat - to me, personally, it is wrong.

Thank you xxx

OP posts:
Rolf · 29/07/2010 23:13

No, I'm not on CAT. If you change your settings to receive e-mails, then I think I'll be able to contact you (?)

Original poster
PenfoldsGlasses · 29/07/2010 23:17

Hi Rolf this is a whole new bit of mumsnet to me

Just changed the settings now, I truly appreciate this x

OP posts:
lucy101 · 30/07/2010 10:09

Hi there,

I am so sorry to hear this. We had a similar experience which did not end happily... but please don't immediately think that this is the what will happen to you. Our situation, sadly, was at the severe end of things but actually this is very rare and many babies (the majority in fact) at the milder end are absolutely fine and some of these problems even resolve during pregnancy.

It's hard to say not to google because I definitely couldn't stop doing that... in fact I read every single google link which dealt with our baby's condition (which took days). It was painful (and there is a lot of unhelpful and even damaging information out there too) but at least I could ask very good questions in the short time I had with consultants... however you don't have a diagnosis yet so maybe you scaring yourself more than you should be.

You should really take a look at the ARC website (www.arc-uk.org - antenatal results and choices) - or even better ring them (I did on numerous occasions) - they are a truly wonderful charity who have helped many many people.

I don't know where you are, but if you are near London or can get there easily you might want to get a second opinion at the FMC (The Fetal Medicine Centre, 137 Harley Street, London, W1G 6BG 020 7486 0476). They are very, very skilled in looking at scans and discussing these sorts of problems and outcomes etc. They were also exceptionally kind and wise to myself and my husband. My NHS consultant was great too but my FMC doctors had more time to explain things to me and answer questions.

I also want to tell you to take very good care of yourself right now (which is why the googling might not help!).
You may have a very stressful few weeks or months ahead, waits between scans etc. and will need all your strength for both you and your baby.

Original poster
PenfoldsGlasses · 30/07/2010 10:50

Thank you Lucy101 Im so sorry to hear your experience was not a happy one.

I am in Scotland so not able to visit FMC but appreciate you suggestig this.

Will check out the ARC website now.

I realise that we are at the begining stage without real confirmation of anything - it is the way you are left hanging around and waiting for further scans that leads me to Dr Google.

I appreciate your response and good wishes.
Take care
x

OP posts:
Original poster
PenfoldsGlasses · 30/07/2010 18:14

.

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midori1999 · 30/07/2010 21:00

I don't know if this helps at all, but my friend's daughter has Spina Bifida and although she is monitored, she is 13 and you really wouldn't know, although I understand from my friend that she has some discomfort some days. She's a very sporty and active young girl.