Stroke in utero

[BabyO21]

Hi!
I found out by complete accident 3 weeks ago at 27 weeks pregnant that my son has fluid on his brain. Fast forward three weeks to today, we have had a few scans, been referred to a specialist in Leeds and had an MRI. Yesterday I received the basis of the MRI results over the phone (we're seeing the neurologist today), but it confirmed what we had thought, that our baby has had a stroke in the middle of his brain at some point between 20 and 27 weeks. His right ventricle is measuring around 20mm, his left we don't have a measurement but it apparently looks less severe than the right. His cerebellum is small, although the right shape.
This information was given over the phone and we were given a brief overview of the horrific future he may have, ie never walk, talk, may be deaf, blind etc. One positive (although it wasn't even positioned in this way) was that the outside of his brain looks like it's trying to correct itself.
Has anyone else had any experience of babies having a stroke in utero? We understand that it's impossible to know the outcome for him until he's here, but any stories of hope would be so appreciated right now ❤️
Thank you!

[danni0509]

Hi. Sorry no experience at all of your babies condition, I just didn’t want to leave you unanswered.

Hopefully someone will be able to post for you soon

One thing I will say though drs do tend to give you a really bleak outlook, I can’t speak for your babies condition but in my sons case (autism) they told me my son would always be non verbal / have severe learning disability / he would be unable to understand what we said, it was extremely depressing to hear that when he was a toddler, but at 7.5 years he fully talks / understands us (so much we spell words out when it’s something he shouldn’t hear) and although he does have a learning disability & attends special school his LD is moderate rather than the severe they predicted.

Hope you can get some answers xx

[BabyO21]

@danni0509 thank you! I think it's the bleak outlook that hurts the most. We've already been through every possible emotion and know that we will love him no matter what, but somehow it still hurts to hear he may never walk, talk, fees himself etc. That's the part I'm most nervous for hearing today because we love him regardless!
I've Heard many stories like yours now where the outlook has been terrible, but the doctors have been proven wrong...I hope that's the case for us too!

[Bumblejuly2020]

Hi, first off it's so difficult finding out that something is wrong with your baby, I hope you are taking care of yourself.
I have a different but I somewhat similar ar experience. My now 10mnth old Dd was found to have fluid at the back of her brain (her cerebellum was small) at our 20 week scan. After having an amnio and MRI, consulting neurologists ect they came up with a diagnosis and then after she was born she had some unusual symptoms and they changed there mind, although it's still up in the air.
Nobody can tell us how she will develop even now, she is some what behind but not hugley, and we still live with a great deal on uncertainty, as you say will she walk/talk/have a normal IQ. Its incredibly difficult and I still struggle with balancing being hopeful that she will develop and trying to not have expectations of what she will be able do.
I try not to live in the future too much but instead enjoy the moment. She is the light of my life, she is developing a personality, laughing hysterically at things falling over, loves mash potato and enjoys her many hospital trips to the hospital (lock down baby!). I love her an extraordinary amount and wouldn't change her for the world, even the tricky bits.
The brain is such a complicated and poorly understood organ that it's basically impossible to look at a scan and predict an outcome.
I know it easier said than done but try to enjoy the rest of your pregnancy and soak up every second with your baby when they come!

[BabyO21]

Thank you @Bumblejuly2020 for your reply ❤️
The meeting with the neurologist today unfortunately revealed more than we thought. They confirmed the stroke, but the worrying part is it looks as though he is continuing to have strokes and they don't know why. They said both parts of his brain are damaged, and his cerebellum is small and 'not as smooth' as he'd like to see. We've been given a prognosis of severe cerebral palsy, been told it's very unlikely he'll achieve much because of the significant damage and the fact that the strokes are continuing and therefore continuing to damage his brain.
Utterly heartbroken, and also quite angry as I feel we were given false hope over the phone yesterday.

[danni0509]

@BabyO21 that must of been so difficult to hear today.

You must be so stressed you poor thing!

What are the next steps? Do you have any more planned appointments? How is your partner coping?

Take care x

[BabyO21]

Hi @danni0509 we're just heartbroken. The midwife today said they'd not normally do anymore scans as his brain can't get any better, but I think because of how distraught we both were, they're doing another scan in 2 weeks time.
My husband is heartbroken also. We don't want to give up on our boy, but hearing news like this makes you question if it's cruel to keep putting him through having these strokes.
We've been asked to think about termination and get back to them, it just makes me feel sick even thinking about it.
Thank you for checking in 💙

[Bumblejuly2020]

@Baby021, I am really sorry that you got such different and difficult information.
At points in our journey we considered termination. It makes me feel sick thinking about it now. Its such a personal decision and there is no right thing to do. Depending on the quality of life your little boy may have and how your family will manage (I know it sound heartless but having a child with severe disabilities/significant medical needs is very difficult and its important to consider how it will affect you). There is a board on here called antenatal test I think and that might be a good space to talk to people who have been through similar things.
My thoughts are with you!

[Wordup19]

We found out at 20wk scan that our LOs ventricles were bigger than she should be and we're given the options talk. I really feel for you op and remember being taken to that side room so well. So far at 4mo she's had to have one brain op but is generally doing everything she should. We live and wait to see what the impacts on her brain were in the womb on her longer term development and behaviour but I guess my message is you will love whatever arrives and don't forget medical professionals have a duty to tell you the worst to prepare you.

[Worldwide2]

I'm so sorry you are going through this and I haven't gone through anything like this personally. However my close friend had her baby very prematurely, before he was born due to all the complications with pregnancy and baby they told her similar to what they have told yourselves. He wouldn't talk, eat ect have no real quality of life and they didn't know how disabled he would be.
That little boy is 3 and he has some development delays but races around like a rocket and non stop chatter. A very happy lively little boy. They do give you the bleakest outlook I think to prepare you for the absolute worst not that anything can prepare you. So just to say as you have chosen to continue with your lil boy as my friend did there maybe a different outcome to what they are saying. 💐

[danni0509]

@BabyO21 just wanted to say I’m thinking of you xx

[Blue4YOU]

Oh OP. I’m so sorry.
I have a seriously disabled daughter. At 20 weeks we discovered she wasn’t moving and had bilateral club feet.
We were seen in UCL.
We had a horrendous pregnancy of up and down prognosis but most of them thought she’d never play or sit up or walk.
I’m just finishing her appointment for setting up her walking frame!
She’s nearly 4 but is full of life and humour.
She’s not verbal and can’t swallow safely so is fed through a hole in her stomach.
But she’s trying to talk, understands everything (!!) and is the most wonderful child.
It’s definitely very very difficult though.
I had no support (my DH was setting up his business when she was born) and no family help.
I’ve had to give up work - though hopefully can pick up again once she starts special school.

I’m mentioning this because I often think if I’d known in advance how “bad” she’d be I would have had to force myself to terminate but… she wants to live!!

She had evidence of a rougher than usual brain matter and multiple bleeds in her white matter though they’ve never said her brain caused her issues.
I’m no medical expert but she is very very like a serious case of CP.
I’m hoping for uou and your DH that you get helpful information from the hospital and the best of luck for what comes next.
I will be thinking of you

[Ozanj]

DC in India has a dd who was diagnosed with a stroke after birth. At first she couldn’t move or coordinate enough to nurse and they were told her prognosis was really poor. But she received specialist care and by 4 she was able to talk and walk with a walking stick (she had right side paralysis and some minor left side issues too). She’s 20 now and at uni studying IT.