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Children's health

My unborn baby is unwell

29 replies

Iamchanging · 20/09/2017 14:42

Hi all,
Don't really know why I'm posting this, there's nothing anyone can do. I just wanted a hand hold I suppose.

I found out last Friday at my 22 week anomaly scan that my baby girl has increased ventricles, basically additional fluid on the brain.
I've had to wait a week for my consultant appointment (tomorrow at 9.30am) and I think the stress has really got to me now. I keep being sick, with a pounding headache and dizziness. Not helped by my dad calling me yesterday to tell me that "he has been thinking about it and he 100% supports me having a termination." Just what I needed to hear when I'm trying to be positive and have never even discussed termination. She is a much longed for first baby that we went though fertility treatment for, but apparently we should just throw the towel in 🙄

Anyway sat on the sofa watching shit films and cuddling my fur baby (cat) as I couldn't face work today. Also reading every published trial and systematic review ever published on the condition.

Sorry for venting, just don't really know what to do with myself.

OP posts:
ineedwine99 · 20/09/2017 14:43

Fingers crossed for you OP and hoping for some good news Flowers

notsusan · 20/09/2017 14:45

So sorry to hear, sending love. Do all you can to look after yourself. I hope tomorrow brings some good news x

Iamchanging · 20/09/2017 17:51

Thank you both

OP posts:
Witchend · 20/09/2017 20:02

(((hugs)))

Give yourself time, and don't google. No one puts a blog post "they saw this on the scan and it turned out to be no big deal" so you always see worst case.

At our 20 week scan we learnt that dd2 was missing her hand. We were booked straight in the next day to see the consultant and the specialist hospital the next week.

Nothing can prepare you for the moment you realise it isn't all well. For me, it was like grieving for the baby I thought I had, and adjusting to the new baby.
I went through denial (maybe they're wrong), and then sadness, before desperately trying to change the world for her-I planned a whole adapted home, which dh (much more practical than me) said "let's wait and see what she needs" and I was so cross with him for not doing it because we had to make everything perfect for her. He was right-we didn't need one of the adaptions I'd planned.

One thing I was grateful (later) was that no one mentioned termination. We wouldn't have considered it, but it would have made her feel more like a mistake than a person, so I agree with how you're feeling about that.

There were worries I couldn't express to people-would I reject her when I saw her? Would I be able to look at her little arm? I even wished it was her leg so it could be hidden easier in a sleepsuit.

When she came out it didn't matter. I don't think I noticed her arm when they gave her to me (she did scream at about 60 decibels for about 2 hours!) and I cuddled her and it didn't matter any more.

The hardest time was waiting and not knowing. It could have been much worse than just her arm, there are conditions connected to it. They're very rare, but you still have the possibility. And the worries I had that I daren't express to anyone, and even if I had, nothing they could have said would have taken them away.

I can think about after the birth fine, but remembering the dark time between finding out and birth is hard even now.

She's 13yo now and I can't imagine her with two hands. She has had lots of advantages as well as disadvantages and would be a totally different person if she hadn't had that.

((hugs))

FoodieToo · 20/09/2017 20:13

Hi op. My sister found out exactly the same at a similar time . That was this time last year.

However her baby also had a shoirt femur, tetralogy of fallot ( 4 different heart issues ) and an unusual shaped skull!!
He was born and was in hospital for a few months because of his heart .
He's grand now and developing normally.

I read all about the enlarged brain ventricles at the time and it seems in very many cases it spontaneously resolves .

Anyway, hope that cheers you up a bit!

Pancakeflipper · 20/09/2017 20:14

That's a fab post Witchend.

Hugs to you Iamchanging. The helplessness is awful and sending you virtual strength vibes to help you get through the waiting. I hope that the scan gives you lots of answers tomorrow and the news is good (don't google).

Take care.

Iamchanging · 20/09/2017 20:14

What a lovely post whichend, thank you so much for sharing. I can completely relate to the emotions that you described.
The wait has been tortuous, and I almost feel like I'm disconnecting myself from her if that makes sense? I felt her kick for the first time the evening of the scan and I felt no joy at all, even though for the last two weeks I have been desperate to feel her. I've stopped using the bio-oil every night.
I suppose it will get better with time, but at the moment I am struggling I have to admit.

OP posts:
Changerofname987654321 · 20/09/2017 20:15

This is a very stressful situation but your headache and sickness may not be the result of stress. Please ring the emergency number on your maternity notes for advice.

Iamchanging · 20/09/2017 20:16

Sorry foodie and pancake I was typing and missed your posts. That's wonderful to know that your sisters baby was ok, everything crossed that I will have a similarly positive ending.

OP posts:
inniu · 20/09/2017 20:19

Try not to think of the worst.

My DD has enlarged ventricles. We only found out when she was 7 because she needed a brain scan after a bang to the head. There was a huge fuss, loads of specialists and tests. Eventually they just decided some people have enlarged ventricles.
She is a normal, intelligent teenager these days.

Iamchanging · 20/09/2017 21:02

Hi Inniu, that's amazing that you didn't even know!

OP posts:
cestlavielife · 20/09/2017 22:52

My d's had enlarged ventricle
Which resolved
Except it didn't really
But he does have a chromosome disorder

The waiting is hard
Did you have the nipt tests etc ?
Would you have amnio now to look at genetic conditions ?
Does it matter ?
You can ask for 4d scan to look for any markers etc . To give you more information. But really you can't tell from this the prognosis. Could mean nothing or something
It s not helpful I know but it is what it is.

cestlavielife · 21/09/2017 10:24
  • with DS my first i thought -

I wan this baby no matter what
I don't know if I will have another chance so I will continue whatever
no one can tell the outcome...it could mean nothing or something

but it was v hard.

wait til you have more information.
if nothing else major is detected then maybe the decision to carry on will be easier... and as pp said above, you can have excess fluid and it means nothing...
SindyFishtail · 21/09/2017 10:36

How did your appt go Iam? How are you feeling today? Be kind to yourself it really must be a worrying time but you have great support here if you need to vent some more!

ineedwine99 · 21/09/2017 15:49

How were things OP?

Iamchanging · 21/09/2017 15:55

Hi both, thank you so much for asking. It was as good as it could have been in the circumstances! Her vents are now measuring slightly smaller and they couldn't see anything else wrong with her. She wasn't in a great position though so off for an MRI on mon to check and had more bloods done. I declined the amino at this point. So all in all it's still not great but so much better than it could have been!

OP posts:
picklemepopcorn · 21/09/2017 16:07

My unborn DN had some kind of cysts around her brain, according to the scan. Lots of anxiety later, she was fine. She's a midwife now.

ineedwine99 · 21/09/2017 16:26

Keeping my fingers crossed for you both OP that things keep improving

Pancakeflipper · 21/09/2017 21:00

Be thinking of you .

GinIsIn · 21/09/2017 21:20

My DS has a heart condition. We didn't find it out until after he was born. He's still him, and he's awesome.

BlackSwan · 21/09/2017 21:22

Thinking of you and hoping it's all going to be just fine - what a rollercoaster for you. Try keeping calm this weekend, be kind to yourself. x

Yogagirl123 · 21/09/2017 21:38

What a worrying time for you, I can understand how you must feel. I was also given bad news when I had the 20wk scan with DS1, they thought there was something wrong with his kidneys, quite honestly I was really scared, as they were talking about operating as soon as he was born as he wouldn't be able to pass urine etc. They decided to scan me again at 32wks and it was fine and the problem had corrected itself. He's now 16, at college, and not had any problems whatsoever. Try not to worry OP, good luck.

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Witchend · 22/09/2017 10:28

Glad it was as good as it could be. Keep going and give yourself time. Flowers

Iamchanging · 22/09/2017 18:50

Thank you all for your messages. Got a call from the hospital today and the MRI machine has broken so I have to wait until Thursday now 😢 That's amazing Yoga, I really hope that my story has a similar outcome

OP posts:
picklemepopcorn · 22/09/2017 19:01

Oh no! The waiting...!

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