Bleeding on the Brain

[x-amy-x]

What a rubbish title couldn't think of another tho!

Hello, just sticking my head in here. I gave birth to my little miss Connie last Friday at 26+2. She is 5 days old today.

On her 2nd day she had quite a 'severe' bleed on the brain, she almost died. But she's still hanging in there and showing improvements hour by hour.

She had a head scan 2 days ago and we're still waiting the official report. I am absolutely dreading it. I was wondering if there was anyone who had experienced something similar.. and what might I expect to learn from the report?

Thank you in advance

xx

 

[25weeker]

Hi

What a scary few days you have had.

My daughter had a large bleed on her left side which was discovered at birth. They basically told us at the time that it was a waiting game to see how it would affect her but would most likely affect the right side of her body. For the first month she had regular scans to check for blockages and to see how the bleed was resolving and until discharge they measured her head as a blockage would cause a build up of fluid which would result in her head growing quickly. On discharge they were happy the bleed had resolved and the cyst that was left were the bleed had been would not cause any fluid build up.

My lo is 2 in 2 weeks time and we have been extremely lucky as her bleed to date has not shown any problems. She has no weakness on her left side and she is walking and talking well.

Unfortunately it will be unlikely you will get any definites of what the bleed will mean for your lo because the brain is complex and in many instances the brain can rewire itself.

There is a few of us on here with lo with brain bleeds and the outcome has been positive.

Feel free to pm me if you have any questions.

Good luck xx

 

[kelzyboo]

Just sending you lots of positive thoughts hun x

I don't really have any advice only that the most they tell you (or the most they told me) was what area had been affected and how much they believed it had been affected and what that area is for,ie speech, memory. Its very hard for them to tell how much or little affect it will have later on in life. Obviously it wasn't great news for us (which wasn't all caused by brain bleeds) but i'm keeping my fingers crossed for your little girl.

As the previous poster said, there are a lot of success stories where the outcomes have been very positive.

Thinking of you and your LO xx

 

[Srrme]

I do not have any advice (my son had a Grade I IVH) but I didn't want to read and run. I hope everything turns out okay, and your little girl pulls through!

 

[x-amy-x]

We got the results last night. She had a bleed on both sides of her brain... at Grade 3. Still trying to process the information and feel pretty upset about it. Feel like it's very much my fault. Going over all the what-ifs in my head

 

[AP]

Hey lovely lady
I was going to recommend coming over to chat to us. Theres a few of us because its so common.
Alexs was a Grade 4, at the mo she has a slight weakness of her right side but her left side has compensated for it so she is on the move. We have so far only had developmental issues, but it seems at the moment shes going at the right pace, she just started a lil later!

The docs will keep an eye on the bleed to make sure it is resolving/not getting any bigger
Connie should have some follow up with physiotherapy and regular check ups to see her progress. Physio really helps. xxxxx

 

[x-amy-x]

Thank you... im just scared. Feeling like this is all my fault and driving myself crazy with how my poor baby might suffer when she should still be in my belly

 

[AP]

It's totally not your fault darling. It really, really isn't. You did fantastic!

 

[Marleysgirl]

Andrew had a bleed in his head before birth, I have no idea what may have caused it. They never told me what "grade" it was, and it took an MRI scan to confirm that it was on the brain side of the membrane (rather than the skull side).

He has hearing difficulties, this could be related to the bleed, it could equally have been that his nerves didn't continue to mature after birth, or he could have been in that small percentage who develop hearing problems as a result of being on oxygen. He wears hearing aids but also seems to be learning to listen more.

He also developed epilepsy at 8 months (infantile spasms). Epilepsy has an underlying cause as well as a trigger - and the hospital didn't investigate further as to the cause, they said it was probably the prenatal bleed. Fortunately he responded well to steroids and is currently clear of any epileptic traces.

He's now an active, bouncy, lively two-year-old

 

[EmSmith1980]

Anya has a grade 4 on the right side at a couple of days old. She is 14 months old actual/10 months corrected and has mild hemiplegia on the left side. Her development is delayed, but at her last appointment we were told the development delay is NOT due to the IVH, and is just due to the fact she is a 23 weeker. They said she will eventually do everything, but she will do it in her own time. We were given the worst case scenario, that being she would be severely mentally and physically disabled. She honestly isn't. She is a happy, bubbly, determined, very clever wee girl. She may be slightly different. But that is who she is. To me she is perfect. Xx

 

[PleaseBaby]

Amelia had a grade 3 on right side and a grade 4 on the left side she is still young 8 months/5months so we dont know how its going to affect her but so far shes showing no ill effects. Shes rolling and trying to sit and the drs are happy with her progress so far. It really is just a waiting game though. It's so hard.

Thinking of you all x

 

[vermeil]

To give you a positive story, my 27 weeker weighed 1lb4oz at birth (the weight of a 23 weeker) and got every single complication that preemies can have, including quite a few scary ones.

Before the csection we were told his survival odds were 25%.

Then after the birth that he *might* survive but would almost certainly be heavily handicapped physically and mentally

Then after 6-8 weeks that he would probably survive but with all of the complications he would certainly have many handicaps for it

THEN that he seemed generally ok but his severe retinopathia might leave him blind.

THEN that he seemed fine after all, but when he starting showing signs of light hemiplegia (a slight stiffness in his right side) that he had cerebral palsy and that it might get worse and so he might never walk and have brain damage

THEN that he`d probably be able to walk with a walker

THEN that he`d be ok with a cane

...

yep you`ve guessed it, a year after the CP and hemiplegia diagnosis, all signs of stiffness have disapeared and he`s a happy, bright, chatty, thriving 17 month old (corrected).

HE`S ABSOLUTELY FINE! HE HAS NOTHING!!!

almost 2 years of living in terror, being told doomsday scenarios for nothing.

What do doctors know

You can see pictures from day 1 to a year in my sig

 

[whistle]

Our LO (24+6er) had bleeds on both sides of the brain but to be honest I can't remember what grade they were or anything like that. I remember those horrible first few weeks when we would be sat down by the consultant and told the possibilities of what treatments he might need and what problems might occur.

They told us that it was all a bit wait and see, but once he started doing things like feeding for himself, developing skills etc they would start to get a more accurate picture of what problems he may face. So far, at 6 months corrected age, he is doing fine and is on target for most things.

I remember telling hubby that I didn't deserve to have my LO as I'd 'caused' his prematurity. It feels very real at the time, and it still does to this day sometimes. But it's absolutely, utterly not true. Have you had any prenatal docs or consultants chat through your pregnancy with you and explain as far as possible what happened? I asked for this and found it really helped, just to have a dr say there was nothing I could have done. None of this is your fault. It's horrible, but all you can do now is stay strong for your baby girl, go see her, speak to her, touch her when you can, read to her, sing to her and when she's older she won't remember all these horrible things that are happening, but she'll have a lovely bond with her mummy.

Look after yourself.

 

[rt1397]

Hi first of all I want to say its not your fault there is nothing you could of done differently. My daughter was born at 29 wks and was badly bruised on the head and suffered a bleed (I wasn't told the grade) but we were told "Its nothing its ok very common in preterms and will rectify itself". However, a scan a few days later revealed although it had indeed stopped it had blocked the area inside the ventricles in the brain where the cerebral fluid is reabsorbed to maintain a balance within the body. So simply her head was expanding at a great rate. She had to have lumbar punctures every day until she reached 5lb when she could have the op to fit a shunt to drain the fluid to her stomach. The doctors gave us the worst case scenerio and at the time it felt like the end of the world to us. N

 

[rt1397]

(sorry hadn't finished!)

What I was gonna say was I'm not trying to scare you as she has just turned 5yrs. Her shunt sometimes brakes and needs replacing, she has mild cerebal palsy and walks with a frame. She has just started walking a little independently. But she doesnt let it stop her she is a bubbly fun loving girl just like her peers who love her. Its not easy all the time but its not as bad as we envisioned it would be when we were given the diagnosis and there is no reason she shouldn't lead an independent life. I hope I've been of some reassurance to you. I really hope things go well for you. Head up and be strong