ivh help plz

[dippy]

hi...i gave birth to a beautiful baby girl at 26 weeks.all was well until they told me she has a bleed..i have asked about the grade but they said they dont use the grading system but her bleed is 'quite significant' . iv read about ivh and its quite scary and am now contemplating wether i should carry on her care. i know it selfish but what if shes worse off later....i dnt know what to do or expect. plz advise me on this.

 

[divadexie]

Oh hun I dont know what to say but I didnt want to read and run ((((hugs))))
I would demand the head consultant sit down and have a chat with you I think s/he would be the best person to discus your concerns with, I wouldn't like to advise what to do xx

 

[25weeker]

I would ask them to sit down and discuss things with you like is the bleed one side or both sides and what they think the implications of it is. Remember though consultants always tell you worst case scenario. In the Nicu I was at they said if they felt a baby would have no quality of life they would make the decision to withdraw care rather than the parent.

The brain is complex and in a baby other areas can compensate for the damaged area. If it is one side then it is the opposite side that can be affected but this could be as little as needing some physio.

Once you have a better understanding hopefully this will help you make a decision.

 

[dippy]

thanks ur right i need all details but husband has said that whatever the outcome she is OURS!!!!

 

[divadexie]

You know, the tiny ones are so often the strong ones!

My son was born (5 years ago) 4 weeks early he was 5lb 7oz but within a month or so he had caught up so quickly!

My little girl was born at 25 weeks and one of the first things the paediatrician said to me ''there is a high chance she will have learning difficulties when she gets older'' it scared me, but I just threw that thought aside, she is my little angel she is so strong, your hubby is right though. The doctors/consultants would say so if they believed she wouldnt have any quality of life ((hugs))

 

[AP]

Hi there hun

Our daughter was born at 27+4 and has had a Grade 4 IVH (the biggest) on the right side of her brain. Thus means that its likey to affect her left side of her body.

I imagine you are in the US? In the UK we aren't normally given the option to stop care in respect of an IVH, unless its awful circumstances.

They can cause something as little as needing glasses to cerebral palsy - the spectrum is huge and theres no telling.

Alex is going to be one year old next Sunday. We have had several check ups from neonatal and they wont recommend us a physio because right now she seems fine!

There was another baby in neonatal who had exact same as Alex and he's doing well too

I will recommend something - DONT GOOGLE
I bet you haven't read many stories that have outcomes? It leaves you feeling "What if...."

IVH's are common in preemies and there just is not enough support out there to help parents deal with it emotionally.

The healthy part of the brain can take over. Physio can help too!

There is another member on here who has a little boy and he's doing amazing too after having a Grade 4 IVH.

www.princessalexsdiary.blogspot.com is my daughters blog.

 

[Luzelle]

Thinking of you....

 

[dippy]

Thanku sooo much ladies it really is comforting to get sum support. Well after my husband sed she's ours regardless I felt much lighter and accepted it. Howeva today doc has said that it's not in the tissues and they will check again next week. I'm confused anyway when I asked him if I could relax he said yeh so I'm going to take it as a good thing either way I'm getting to attached. Sb I'm based in uk and yh google really depresses me.anyway enuff babbling ...uf alex is beautiful and ladies thankyou. Xxx

 

[Agiboma]

so much hugs hun let us know how you make out, wishing you all the best

 

[ProudMum]

i'd like to add to this thread firstly im so sorry to hear about your little girl and i hope she recovers as quick as possible without any complications- secondly, i was born at 29 weeks and i had a huge bleed on the brain and given 2 hours to live-
25 years later here i am with absolutely no problems whatsoever. drs dont know how i survived such a huge bleed, but i did... i only spent 8 weeks in the hospital too. (according to my family)
personally, i dont take notice of the "odds", basically because i know i beat them all.
best of luck to you xxxx

 

[dippy]

wow its lovely to hear stories like that...people like u are a gr8 inspiration. i hope my lil 1 is a fighter like u. thank you xxxxx

 

[ProudMum]

wow its lovely to hear stories like that...people like u are a gr8 inspiration. i hope my lil 1 is a fighter like u. thank you xxxxx

its because of what happened to me as a baby that i have faith- how a child can survive what i did is beyond me.
my family always tell me of the story of this baby born at 29 weeks, a deadly bleed on the brain and a severe heart condition who was given just hours to live and baptised in the hospital by the chaplin, who was ready to pronouce this defenceless baby as loosing the will to live and fight for life- my dad then tells me of the outstanding miracle that just moments after being baptised i opened my eyes and started screaming...
drs have no idea how the bleed stopped