Brain bleeds grade 4

[keys27]

Morning guys

I'm trying to find people in similar situation as me and who have experienced it.

On 27th December my Xmas was turned upside down as I gave birth at 27 weeks I remember feeling so sick and scared as I knew it was far to early. She came out crying and her apgar scores were perfect. However 2 days later my whole world came crashing down on me. The doctor told me my baby had suffered a serious brain bleed to the left side of her brain and the next 72 we're touch a d go. As a parent for someone to say your baby may die well words can't describe it my husband was sick and I jut lost all feeling in my body! She had a grade 4 the worst kind but doctors told us to have faith In her as she was beating all other odds.

She is now 2 +2 weeks old and breathing by herself tolerating he milk making fantastic progress.

Me and her dad are so worried about what next though she has fluid building up in her ventricles now and there talking about removing it. We've been told she has a 50% chance she will have some form of disability but to keep faith I suppose they have to tell you the worst.

Has anyone been through this? Can you share your outcomes?

Thank you very upset and scared mummy x x

Hello keys firstly let me say I am so sorry for what you are going through. I have no advice I'm afraid but I didn't want you to go unanswered.

I just wanted to point out that I think you may be better asking for this thread to be moved or you could repost in a more appropriate topic like children's health. You will see that this is a very quiet topic and you will get much more help and support in a topic that gets more traffic.

You could report your own thread and ask it to be moved or just copy and paste your OP.

Best wishes to you and your family.

Thank you for your reply I've reported my post so hopefully will go to the right place. Thank you again x

Hello Keys I am so sorry to read about your dd 's early arrival and bleed on the brain. I am afraid I have no experience of this particular trauma but my 17 DS is fighting a brain tumour so I can relate somewhat to the horror of the situation you find yourself in.

My son had fluid building up but that was because of the tumour. After surgery he did not require a shunt as his brain was able to process the fluid levels eventually. I don't know your situation but I think the Drs would consider inserting a shunt which helps drain excess fluid. I know three people who have had to have this done at different times of their lives, a newborn, a 26 year old and an 8 year old and all are doing very well with it.

With your dd being so young it will be harder to know at this stage what damage has been done and how permanent it may be. Some things may only show up as she grows. The brain is an amazing thing and recovers in ways that are expected and unexpected. My DS recovery is going well although he has been left with disabilities that he is learning to live with. However 14 months after surgery there are still signs of recovery that the Drs did not expect - he is proving them positively wrong in some aspects which is fantastic.

In all brain injuries it is a long term healing process and that in itself is exhausting, frightening and seemingly relentless. Find out all you can, ask as many questions that you can if the Drs so that you at least feel as informed as possible. Write a daily diary if everything that your dd does or is done to her so you don't have to keep remembering things. This diary will also show you if and when your dd makes small improvements.

I hope your dd makes fantastic progress. Xxxx

Ditto the shunt. My DD(19) had a car accident and has severe brain damage as a result. She had a craniotomy and later developed hydrocephalus (fluid in the ventricles) and had a shunt just before Christmas. It is working fine and the fluid is draining well.

Not exactly the same as your situation but it might be worth asking whether her doctors will put a shunt in. Good luck xxx

No one can predict the outcome, you need to take it day by day. Ask questions and ask them to write things down for you .
The diary suggestion is good.

Meanwhile get on a site like bliss call them on the phone and post o their forums to get support from others on the same journey.

www.bliss.org.uk/

It might be worth posting on the special needs children section of mumsnet here for people who have been through this.

both my sisters (born at 28 weeks, twins) had this with different outcomes,

1: Shunt in place, high-frequency hearing loss and central vision poor (so writes with the paper to the side of vision for example) as she developed hydrocephalus. Went to college though, childcare, did well and mild to moderate learning difficulty. Independent and lives with friends, non academic but happy in job. Shunt did not need any further care until age 21 when she had another procedure to relieve pressure and take away the need for the no longer functioning shunt, quick recovery.

2: Mix up at hospital and with other significant issues was never relayed to family (she had an infection and was not expected to live so probably thought family had enough bad news). Found out at 18 when doctors mentioned it looking at her medical notes for an (unrelated) minor operation. She was very surprised but it explained the slight weakness of her left side, very insignificant but she'd always been unable to forward roll/ cartwheel/ walk a beam like her friends could (but then lots of people can't so it wasn't thought abnormal). High achieving academically, 1st class honours degree etc.

I posted only to share the difference in outcomes, they are a wide range but my thoughts are with you. It's scary I know, talk it out as much as you can x

DD1 had this when she was born (although we were never told the severity and actually only found out it was 'a 4' when we saw a new consultant recently about the DC3 I am currently expecting).

Anyway, DD1 was born, very quickly, at 32 weeks. Lots of trauma but she was breathing. AGPAR scores were a lot lower than perfect.

Anyway, long story short, we had a terrible time (but didn't really know it at the time as it was our first but having had a second, easier one, we know the difference now!) and we were told that the best outcome for DD1 would be high-level cerebral palsy with significant learning difficulties. The prognosis in the early days was that she was unlikely to talk or walk.

She is now 6 years old and, apart from some vision issues, is perfect! She is 'on the top table' in numeracy and literacy in school, can walk and run and learned to ride a bike before she was 5. She was not very physical as a small child and is still slower than her friends when running. She was talking in sentences before the age of 2. Today you would not be able to tell that she had such a hard start in life; she dances, does trampolining and is the most chilled-out, thoughtful person I know.

Her consultant at the hospital, who discharged her at the age of 4, always said she was a perfect reminder of why doctors must treat the child and not the scan as the child can end up doing things they were never 'meant' to.

She is our little miracle and I hope you have such a positive outcome too but it certainly is a long, exhausting road and we did contact BLISS in the early days. They were very helpful and it was good to know that other people were going through similar things as us - and that others had been through it and had survived whatever the outcome.

Good luck.

Very similar experience to Dysgu. DS2 born at 30 weeks, grade 3 bleeds on both sides of his brain. We were also told he may not walk or talk.

I understand the black hole you are in now. It is so hard to live in a limbo, not knowing what will happen to your child.

The bleeds on the brain led to hydrocephalus in DS2 and he needed a VP shunt at 5 months old. He has had no problems with it. He is 3.6 now and no different to his older siblings at that age.

They were the darkest days of my life and if someone had told me then that we would be where we are today, I would not have believed them and more likely would have punched them.

I know DS2 came through by the skin of his teeth. I hope it helps to know that he did and that there is hope that your DD will too.

Keys how are you and your dd?

Hi guys thank you so much for all your replies. DD is doing ok she has to have an MRI scan tomorrow haven't slept at all last night and very much doubt I will tonight either!

However everything she is doing is perfect bless her she's putting in weight she's moving all her limbs etc and her eyes open when you talk to her! We've been told her eyes will be tested at 32 weeks which is scary but i have learnt to take each day as it comes even though I am so so scared! Not for me cause I will love her unconditionally but I want her to be able to run walk talk etc :(!

We've been told she is lucky she's only had the bleed on the one side of her brain (left) which will effect the right side movements but she seems to be moving them ok at the moment!

Thank you all again your advice and support has helped me this morning when I properly needed it the most.

I will let you know how her MRI goes tomorrow. Fingers crossed all our positivity has payed off and her head is starting to heal by itself.

I'm also very sorry to read about your DD's it's great to read there positive outcomes your truly amazing parents xxx

That is really great news, keys. Will have my fingers crossed tomorrow for you all.