Question about bleeds??

[hellybelly]

Hi Girls,

Just reading all your stories they are amazing. All your LOs are gorgeous! This quesion isn't for me but my sil.

She gave birth last week at a day off 29 weeks. Baby is doing great. But everyone now is very upset. She had a brain scan today that shows to 3 degree bleed on the brain. They said this could come down to a 1 degree.

Does anyone know what this means? What will happen if it stays at a 3? What does it mean for her. I have been trying to look it up but dont really understand.

Sorry for all the questions we are just all abit upset she was doing so good, breathing on her own ect..

Thanks for your help xxx

 

[AP]

Brain bleeds are graded 1-4. 1 being the smallest to 4 being the worst.
I hate writing about this but I know theres not a lot of preemies on here with them!
I'll warn you this sounds scary but its not as awful as it can sound!

They depend on where they are in the brain, to be honest. I havent heard of a bleed reducing though - in laymans terms, most bleeds resolves (like a scab) and the scar tissue is left. This scar tissue effects whats going to happen in the future.

My LO Alex has had a Grade 4 on the left side of her brain.
For a while, it wouldnt resolve, and then started blocking the 'pipes' in the brain, so fluid built up. If that had carried on, the fluid would have needed a shunt.
Luckily, in our case, the bleed resolved eventually and the fluid began to run properly again.

The problem with these bleeds, is that the outcome is unknown. The spectrum is huge, for what could happen. Her baby could need glasses to may have a disability of some sort. COULD is the word. I was left feeling like it was the end of our world in some way

Because Alex's bleed was on the left side of the brain, we were told to monitor the goings on with her right side of her body (it affects opposite side) So far, everything seems fine.

Your SIL's LO will be given physiotherapy if required after discharge, to help! We havent had any, simpily because shes proven that so far, she doesnt need it.

It does sound dreadful, and doom and gloom. But Alex (and another LO on here, with the same) have gone and impressed us and there are no issues as present.

Alex was born at 27+4 and is now 15 months old She is walking along the sofa and is hitting her milestones (baring in mind shes really 12 months old)

If you ever want to chat, or you SIL, I'm quite happy to help. But let me promise you - when the doctors told me about the bleed, my heart was broken and we imagined every scenario. And we have been so so wrong.

PS Tell your SIL NOT to google. This is one thing not to google!!!!

 

[hellybelly]

Thank you so much.

I don't know the full story as when my brother rang he was upset. The doctor told him there was a baby on the ward that had a grade 4 and went down to grade 1. So not sure if the doctor meant what you are saying about bleeds resolves itself. I am not sure what side the bleed is on either. They are getting another brain scan next Monday to see if anything changes.

I'll tell them not to google, I did and it was a bad idea.

They have had a hard year this time last year they lost Freya at 23+4 weeks. AAahhh I could just wave a magic wand and make everything better.

Thank you for taking the time to write such a detailed reply!

xx

 

[AP]

Thats ok, whatever happens, im here if you need advice. Your SIL/brother is very welcome too. Alexs story is here www.babygagasdiary.blogspot.com , right from the very first day

Dont let your brother waste his tears - ANYTHING could happen, the docs will say the worst so you are prepared and to cover their arses

 

[Foogirl]

I have no experience of bleeds at all, but I just wanted to echo SB22's advice. Google is NEVER your friend in these situations. Conflicting information is hard to decipher and no-one ever posts the good news stories - and for sure there are plenty of them.

This forum is the only one I found where good, solid advice from those who went through things was given.

I'd also say to have a good chat with the consultant. Your brother and his wife need to sit and write a list of all their questions and ask to sit with the consultant for as long as it takes. Writing them down (and writing down the answers too) is really useful as it is such an emotional time you can never think straight.

 

[hellybelly]

Just read your whole story there. What an amazing little girl you have. She is so cute.
Ill tell my brother and sister in law about your blog. Hopefully they will get some comfort from it!!

Hopefully our story will turn out like yours.
x