Bad news at scan, really not coping well.

[KatiePink]

Yesterday we were so excited we would get to see our baby on screen again and although i'd be slightly anxious about the anomaly scan, i genuinely didn't think there would be any issues.

Everything about our baby girl, limbs, organs, spine, heart everything was looking great, except when they got the brain and started their measurements. I knew something was wrong by the silence. The sonographer turned and said to us, 'I have found something today which means i will need to refer you to see a specialist doctor at fetal medicine' She continued 'The left lateral ventricle in babies brain is dilated more than it should, it is 10.6mm, and the higher end of normal is 10mm'.

'That doesn't sound like a lot' i said naively.

'It's enough to need to see a specialist as it could continue to grow, please do not google this, there are cases where people go to see a specialist for another scan and the ventricle has shrunk back to normal ranges, based on everything else in the scan i cannot see any issues with baby at all, please try not to worry'

I left the room feeling very conflicted, baby had put on a lovely little dance for us and we even got to see her facial features quite clearly it was wonderful.

I then had to go and wait 45 minutes to see a consultant who had checked over the scan notes, she called me and my partner in and said to us 'Do you understand what the sonographer has found today' i told her yes but i do not know what it means long term.

She said 'We could not possibly say at this stage, that is why you need this referral, you will receive a letter in the post for an appointment with fetal medicine'

'how long will this take 2 weeks?'

'No it will be quicker than that'

and we went home.

OFCOURSE i googled it, OFCOURSE i did. I read all of the measurements in my file and have read through countless studies, personal stories and would say i am pretty clued up on what we are facing now.

We need babies ventricle to have shrunk, or at least be the same size on the next scan. If it has increased in size this is not good news and we will be offered a fetal MRI of babies brain, plus lots of other nasty tests to determine whether this is a chromosomal abnormality, or if it's increased a lot, Hydrocephalus.

I cried all day yesterday, but my girl is so perfect, i am praying for a good outcome, waiting for this letter and the scan date is going to be so hard. My partner and family are urging me to stay positive and i really am trying.

Please send positive thoughts this way x

[MyNameIsTerry]

Oh Katie I'm really sorry to hear there are complications. :hugs::flowers: It goes without saying that positive thoughts are winging their way to you.

I know you have done some Googling but you need to keep an open mind about this because everything else is healthy and the sonographer did say they can shrink all on their own. At this point, you don't know that it will stay the same or grow. You could get to that appointment and walk out breathing a huge sigh of relief.

Brain is seriously specalist stuff so I think you need to get your questions together from your research about it and let them tell you how things are. And definately don't look for cases any other parents, anecdotes are very unrealiable without a doctor doing the write up.

Stay strong.

[Catherine S]

Katie, I'm not going to tell you not to worry because that would be a silly thing to say. You've been through such a lot, and you'll get through this...at least you're going through it with your little girl's daddy. I hope he behaves himself and supports you as much as you need him to.

It certainly puts other stuff into perspective. Keep us updated.

Luv
Cath S x x x :hugs:

[KatiePink]

Thank you both. My partner has said the same thing, we could come out of there and it has shrunk and everything is completely fine. But of course for someone like me it's very very hard to believe the positive will happen but i'm trying for babies sake. It's just so confusing and came as such a shock, i've been thinking of all the things i could have done to cause this even though in reality i know that this is something i couldn't have controlled. I just want the appointment date now so we can at least speak to specialist and know more, because the guessing and 'what if's' is really no good

I will update when we know more, thanks for positive thoughts :hugs:

[MyNameIsTerry]

You mustn't think this is something you could have brought on your baby. Don't allow thoughts like that any time.

The sonographer must have known what you would find hence trying to dissuade you from looking.

Could it be that they see more of this than we realise and that's because so many cases sort themselves out? It's a pity they couldn't give you an idea of this as it would be something else to hold onto.

It must be confusing but pregnancy gets the best treatment so I'm sure the referral will be quick on that basis. They won't hang around with an unborn baby and they must realise the worry it causes the parents.

Hang in there. Anxiety is going to try it's tricks so accept you may wobble and catch it if you can to stop it pulling you down. Anyone would be worried & confused without anxiety to keep in check.

[KatiePink]

You mustn't think this is something you could have brought on your baby. Don't allow thoughts like that any time.

The sonographer must have known what you would find hence trying to dissuade you from looking.

Could it be that they see more of this than we realise and that's because so many cases sort themselves out? It's a pity they couldn't give you an idea of this as it would be something else to hold onto.

It must be confusing but pregnancy gets the best treatment so I'm sure the referral will be quick on that basis. They won't hang around with an unborn baby and they must realise the worry it causes the parents.

Hang in there. Anxiety is going to try it's tricks so accept you may wobble and catch it if you can to stop it pulling you down. Anyone would be worried & confused without anxiety to keep in check.

To be honest it's all a bit of a blur now but i recall her saying something like Google won't tell you the positive outcomes only the bad. So maybe/hopefully it's more common thank it seems. I spoke to others on a ventriculomegaly forum who said they will have to refer you quickly for investigation as if it's the worst case scenario they will offer a termination before 23 weeks. This just hit me like a ton of bricks. I have no idea what i'm going into but i'm going to keep praying for a positive result and hope that we are one of the lucky ones.

[snowghost57]

I remember your quote and you must do the same thing. Live fully in the present. Medicine is awesome that they found this early and we have treatment options. My youngest daughter is pregnant and I jump when the phone rings or if I don't hear from her. We have to remind ourselves to enjoy each moment we have. Terry is right, write down your questions and don't google. People have posted a million times that a computer will only provide you with what you look for and usually things we don't want to hear. We have to remember physicians have to give you the worst case scenario as well as the best so they don't get sued. Stay positive and strong.:hugs:You will get through this!

[swgrl09]

Oh wow, Katie, I am so so sorry to hear about this. I would be an absolute wreck if it was me. I won't repeat everything everybody else has said, because they are right about google etc. I am just going to send positive thoughts and hope you get some answers soon. :bighug1::bighug1::bighug1:

[pulisa]

I'm so sorry you have got to go through this anguish, Katie. I have a lot of faith in Great Ormond Street and their view of this is that it can be a chance finding of little significance in routine pregnancy scans but of course you need everything fully checked out and you will be referred to the experts in fetal monitoring. The waiting and wondering will be absolutely ghastly but as the others have said, you have to avoid Google and online forums where the absolute worse case scenarios will be discussed. You don't know what is happening with your precious little girl and she is perfect in all other respects. You will have to try to avoid thinking ahead because at this stage you just don't know and this is the torment of course... I very much feel for you as I have been through a similar experience. You just want everything to be normal at the next scan but you do need to know what-if anything-you are facing.:hugs:

[KatiePink]

Thank you everyone, i know i need to stay away from googling or trying to figure out what's going on myself, not just yet, its still early days and i've read many more positive articles relating to this. For example as it's just the left ventricle that has dilated and not both, that can be a better sign, also that it is the Posterior part of the ventricle that has enlarged and not the anterior, which can also be a better sign. There is hope definitely, but obviously i did what i do best and looked at all of the other case scenarios and it seems they far outweigh any positives, but as we all know that's because people share these stories more than ones that came to nothing at the next scan.

My partner wouldn't dream of looking into it until we knew for absolute sure what we were facing, i wish i could have done that, but i felt like i needed to try and prepare myself for what this meant, which is impossible to do!

I've felt better today and just keep thinking about the positives of the scan, going to try and keep reasonably busy for now, decorating babies room and have started swimming again.

Thanks for the replies it really helps just just talk it out on here x

[Fishmanpa]

Sending positive thoughts and prayers...

FMP

[KK77]

Very sorry you're having to endure all this worry and anguish. Wishing you and your baby all the very best. Stay strong.

[HappyBread]

Oh blimey... Well, I don't want to add on anymore stress to you but only comfort so Katie, please stay positive. Don't abandon Lady Hope and she will not abandon you :)

Besides, the other option ain't exactly gonna make you feel like a beautiful unicorn XD

Keep the faith :hugs:

[Pepperpot]

Hi Katie,
I too won't tell you not to worry cos that would be a stupid thing to say. I can only say that I am thinking of you both, and that I will keep my fingers and toes crossed that your little princess is fighting fit. Please keep us updated xx

[KatiePink]

Thank you everyone for your messages.

Just to update we had our scan and the consultant has said the ventricle measured within the normal range, high end of normal, but normal nevertheless.
They checked baby over thoroughly and couldn't find anything concerning, in fact they said everything was just perfect. I was absolutely over the moon!!

They advised me based on this they don't believe there is any reason to be concerned or have any further scans, although they did offer me a few different tests if i wanted them to try and rule out certain chromosomal abnormalities.

I declined these as at this stage everything is as it should be and don't see any reason to put ourselves through more worry!

Thanks again everyone :hugs:

[Catherine S]

Great news Katie, best wishes to you and your little family :hugs:

Cath S x x

[MyNameIsTerry]

Simply brilliant news, Katie!!! :yesyes::yahoo:

See how right that guy was about not heading for Google on this one? So, you've become one of those would be parents breathing a very deep sigh of relief. You become one of those who can now tell those that go through it how it can be alright.

And he did say baby was otherwise perfect. So, now completely perfect.

Good things do happen. A big light shone on a very dark day for so many on here when they read this update.

[Magic]

Good news Katie. You have been in my thoughts:hugs:xxx

[KatiePink]

Thank you :hugs:

Terry i think i have always allowed myself to 'expect/fear' the worst case scenario under the illusion that i will somehow then be better prepared to deal with it if that was to happen. It's just not true at all. My partner says it's pointless and just causes more time of unnecessary hurt/pain/worry when everything might be ok in the end, and even if it isn't you won't be any more prepared! It's just the way my mind is so used to working it's hard to change.

When i was reading stories on this i so much wanted to be one of those parents who were lucky at the follow up scan, but i don't think i actually believed for one second i would be. Good things certainly do happen! And i think we skim past them far too quickly without appreciating, i feel very blessed that we had such a good outcome as i know things can be really rough for others, now that i have been through that waiting time i will definitely be looking to give others more hope who have been given the same diagnosis.

The fetal medicine team were lovely and explained everything so thoroughly, they also gave us lots of free images of baby!

:D

[pulisa]

I'm so pleased and relieved for you, Katie. I hope you can now go on and enjoy the rest of your pregnancy-detailed scans throw up red herrings which can cause so much anguish but I'm so glad you have received the best possible news xx

[Autumn4]

So pleased for you that all is well !
At a scan they told me that my babys head was too large - I worried for the rest of my pregnancy & didn't enjoy labour because they still thought things weren't right. My son was perfect & head a normal size - he is now 6ft 4" .

[Pepperpot]

yay!!!!