for some reason i started to trawl through the net about brain bleeds. i just want someone to say"my baby had a big brain bleed but they are totally fine now"

and its not happening.

I just want her to be ok! I keep telling myself "whos to say I didnt have one?" Im alright?!(i was a 29weeker)

Its not something I know anything about but wanted to send you big hugs
Also looking on the net can sometimes be the worst thing to make your brain leap to the worst possible thing, we all do it!

i have no advice other than to say dont google things, it comes up with the worst case scenarios.

HEY! You should read through Lakai's story then! =)) He had a grade IV (the worst you can have) brain bleed. We were told all about the horrible outcomes, I did what you did and read ALL these heartbreaking stories about brain bleeds. I had myself convinced that my son would be so disabled and delayed.

All the doctors kept giving us stats..and the "worst" case scenarios.

Lakai was part of an MRI study while in the NICU and had two done, the first one showed his brain was developing totally normally. And the second one showed he had some brain damage, very very minor but there was some damage where the blood had resolved.

He is now 8 almost 9 months corrected...he just had his first actual birthday. (he was born at 24+4weeks and suffered more than just a brain bleed that could have resulted in CP or delays). He is not delayed in the least bit, he just had his 8m Neonatal Follow up appointment and he was assessed at 10 months developmental age across the boards, except expressive language because of his paralyzed vocal cord (so you just cannot hear his voice because it's raspy still).

The doctors all say he is a miracle now, and its like he never had a bleed. They said its very unlikely he would develop CP from his bleed at this point.

There ARE positive stories out there. I just find you won't find them online...I have theories as too why, but I won't get into that now.

Don't read the negative stories. Just be aware there are chances, but there are also success stories out there!

I am not sure what degree of bleed your baby had, but if she is meeting her milestones there is usually very little to worry about. Do you have any OT's or anything? Follow up clinic at the hospital?




Im always here if you need to chat or have any questions!

Never, ever google this kind of stuff! I found with all the problems I had, there were very few "It happened to me but it was fine" stories. People just don't seem to spend their time telling the good news.

We were told that Abby has cysts on her brain but they are benign and are outwith the ventricles. The best advice I got from the pediatritian was "take your baby home and enjoy her, what will be will be"

We wont know until she gets older if there will be any effects and I would drive myself nuts if I considered every "what if" We used the internet to research only to find out what questions we needed to ask. Everybody's babies are different and Alex will do her own thing and you will find a way to deal with whatever life throws at you.

Understand the best case, understand the worst case and ask them what you need to be on the look out for and when. But remember that our babies will always do things differently from full term babies so don't worry that any perceived delay is necessarily a problem.

Enjoy her (especially since she had her biiiig poo!!) and what will be will be. Worrying wont change it, it will only make this part more difficult for you.

Thought I would also let you know my daughters story. She was 7 weeks early and they found is I remember right a grade 3 on her along with hydrocephalus. She is now a happy healthy 11 year old. She does have a little trouble with her attention span and has had to have some eye surgery as the muscles were weak (Lazy eyes) But she is doing great. The last time she was to the doc for her head was when she was around 4 we now just watch for signs or symtoms. Hope this helps you some. you can PM me if you have questions.

Very well said. Can I ask what the cysts were caused from? A bleed? Or?

Everyone above is right, don't google stuff as there are never any feel good stories and most of the info on there is misleading or wrong. I googled premature baby stuff at the beginning of our journey and was horrified at what I found and was a right state all the way through.

What will be, will be. Emily had a 4 minute apnea where they didn't think they were going to get her back, thankfully she was resuscitated successfully - I was told the brain starts to die after 3 minutes of lack of oxygen so as you can imagine I was a mess afterwards. We don't know what the long term affect will be and I was told by a nurse as above, enjoy Emily and don't think about the future, you can't control it and what will be will be...so many premature babies suffer from brain bleeds and go on to be perfectly well as Lakai has proven - he has done so well, you just don't hear enough of these stories, as a human race we tend to dwell on the negative...

Alex is so gorgeous, I love the recent photo...you are so lucky...
I can't believe you were a 29 weeker! Wow that is amazing! x

I agree that there tends to be less positive stories because frankly...the positive stories are off enjoying their babies and do not post about them. I think they just don't take the time to write online about them.

And that's the main reason I do.

There are good endings out there, I just don't think Google is the best place to look for them.

I honestly wish someone (maybe I should) start a website for positive outcomes....because man oh man, there sure are enough negative sites. I was actually asked to LEAVE one preemie forum because I was posting in their words "too much positive" stuff and they were getting complaints from other moms/dads who posted there. I was shocked...so who's to say I am the first that has happened too? I doubt I am.

Andrew has a pre-birth intercranial bleed in the temporal lobe, not sure how it would have been graded. He's had an MRI scan and the bleed was confirmed as being on the brain side of the membrane, but his brain is growing normally. They cannot tell us whether this will have any effect, whether there will have been damage, the consultant says that all she can do is monitor his development.

To be honest, I hadn't even thought of googling for stories of others with the problem!