Specialist appointment today! Nervous

[Natnat274]

Today I'm off to see the specialist to be checked out as in my anomaly scan they found that there could be a problem with baby's brain, there seems to not be enough fluid going through one of the ventricles in her brain so I blooming hope infind out today if all is ok!
I'm very nervous and rather tearful this morning but I'm trying to keep positive!
Wish me luck! Have a good day ladies!

 

[Rubyredslipper]

Best of luck, I hope everything is ok. Please keep us posted! X

 

[Cherrybelly]

Good luck! Hope you get some reassurance xxxx

 

[BunnyN]

Hope it goes well. Let us know.

 

[KeelyT90]

Hope everything is ok x

 

[Natnat274]

Hey ladies, unfortunately it didn't go to well, i saw the specialist who did another scan and has confirmed that the ventricles in baby's brain are enlarged, she then refered me straight away to a geneticist who we had a quick chat with and he has said there's a big problem, I have to go back tomorrow for more invasive tests etc and he will then discuss our options, I feel so helpless and now just need tomorrow here and it's hard because I'm in France so its all a bit harder with the language, and the way they do things in the genetic medical system, they don't tell you anything until they have explored every avenue, so it all feels a bit vague!
But thanks everyone for the well wishes c

 

[MillersMissus]

Oh natnat, I really don't know what to say - I'm so sorry hopefully you will know more tomorrow and they will actually give you more information xxx

 

[BunnyN]

So sorry there is a problem. I hope you get more information soon. Hugs.

 

[BunnyN]

I found this information. It might help you know what questions to ask and help understand better what they are talking about. Hope it helps a little.

http://www.childrenshospital.org/co...nditions/ventriculomegaly/symptoms-and-causes

Although it seems that it can have some pretty serious implications it isnt always a grim outlook:

What is the long-term outlook?

Most infants with simple, nonprogressive ventriculomegaly in the absence of brain damage or developmental anomalies will have completely normal and healthy development. Likewise, infants with hydrocephalus who do not have other serious brain anomalies or damage have an excellent prognosis for normal development with timely treatment of the condition.

 

[Kate1985]

Hi Hun, I'm a lurker here but had to reply. I have a 12 week old daughter. At my 20 week scan I found out she had spina bifida and hydrocephalus (enlarged ventricles). I was told the worst things. She would be severely disables have no quality of life etc. I decided not to listen, doctors all tell you worst case scenarios mainly to cover themselves. She's so unbelievably perfect. She had a shunt placed the day after she was born which drains the fluid from her ventricles. I don't know the long term outcomes for her but she's perfect and I'm so glad I ignored the negative talk from professionals. You can pm me anytime. Good luck tomorrow xx

 

[Natnat274]

Thank you everyone! Luckily I have some experience with the French medical system and I know they very very much err on the side of caution - usually too Much! But on the other side I know that they don't act quickly if they don't think there's a problem! So it's all a bit worrying! My mum is flying in this morning to be with us, I couldn't bloody stop her!!

I will let you all know how we get on, thank you once again for the support! xx

 

[Kate1985]

How did you get on? X

 

[Maaaaaac]

Awk Nat just catching up. Hope youre okay x

 

[BunnyN]

Thinking of you today.

 

[Natnat274]

Hi everyone
I went yesterday to the hospital, they gave me an amniocentesis, the doctor still didn't tell us what's wrong with her but he offered us a termination which we were really shocked by considering he's not told us what the issue is,
So when I got back home I called my local maternity unit and spoke to a lovely midwife and explained everything to her, faxed all my paperwork and scans over to them and they have taken a look, they have said that basically her ventricles in her brain are too large, which is called ventriculomyalogy, it falls into 3 categories under 10mm is normal, up to 15mm is mild and 15mm is severe, my girls ventricles are measuring 19mm and 27mm this could mean she has severe brain damage which means she could be severely disabled, I have made the decision to leave my job and go home and receive all my care in England, I feel like this is the best option for me, my oh and our girl, I go home Tuesday, on Wednesday I see the midwives who will look through all my paperwork again and they will check me over and do blood tests etc, then they will refer me to st George's in London for an mri, then we will have to wait for the results and that's when decisions will need to be made once they know 100% what's going on with her,
I'm terrified, and I have to leave my job and my partner here in France to try and keep some money coming in,
All I want to know is if I will be bringing my baby home or not!
Xx

 

[Tonks82]

I'm so sorry Nat. I will be thinking of you Hun.
Xx

 

[Natnat274]

I'm so sorry Nat. I will be thinking of you Hun.
Xx

Thank you! X

 

[Rubyredslipper]

So sorry to hear. I hope you get the best advice and care, and quickly. Thinking of you x

 

[MillersMissus]

How my word, thinking of you Natnat xxx

 

[Kate1985]

So sorry you are going through this Hun. Just want to say that my girl had severe hydrocephalus too I was told she would be brain damaged...,so far she shows no signs of that. She had a shunt placed day after birth and is doing well. Just be aware that they alwYs give you worst case scenario. Make sure you get the best medical advice. Lots of love xxx