Hydrocephalus - Updated with: Our Birth Story on Page 14

[Sammy2009]

I think you are a SUPER parent and I think many would agree with me on here!!!

Not only for the fact that you gave her a chance against all odds, knowing the huge risks (and I don't think i would have been strong enough to do that to be honest) but also because of all the things you have been through, got through and kept positive for. For everything you do for her on a daily basis and your patience with her... its truly remarkable that for now (and hopefully forever!) we only have one of those things to contend with and it makes us look pretty weak when I read everything you have had to deal with in the last year and a half!!! Its amazing... I cannot believe little Tegan has been through so much and her smiling little face on the pictures just show how happy she is and how strong she has been. Shes a miracle, really.

Thankyou so much I know that we have been through a lot, but honestly while it was all happening it was a blur... I didn't realise until after just how much had happened. The way we live our lives is normal to us now, and to outsiders it does look like we do a lot (Tegan has to be catherterised twice a day, she has medication four times a day, then there is physio, a wheelchair when she's older, and she can't use her legs at all so she army crawls everywhere and has to be carried a lot of the time) but it doesn't feel like it to me, she's my baby and I love her with all my heart and I would do ANYTHING for her.

You aren't weak, I promise you that, the fact that you didn't go totally loopy makes you a strong person. It is harder than anyone can imagine to find out there is something wrong with your baby, and it is the hardest decision you'll ever make, because either way, good or bad it is forever.

I have just been physically sick, i think its the stress of everything over the past few days... ironic really to be sick now when i never had any morning sickness at all!!!

Are the catheters so that Tegan will be able to walk on her own eventually or can she walk with the catheters now? I didn't realise that she would have to take so much medication. I suppose its like Hydro, until it happens to you or someone you know then you don't really research it and so don't know much about it. I will always think from now on what an insite it is to learn as much as possible about different kinds of conditions.

At least with us both posting our stories it may help some other people on here and one day and help them to learn about it more. I was worried as I couldnt find anyone or anything on here about Hydro (which makes you feel then like you are the only one!) but I was so lucky to have had the chance of getting to know all about Tegan which only proves anything can be achievable!!!

She's cathed because she doesn't empty her bladder properly. She pees just like a normal person, but she doesn't pee enough because her bladder doesn't work right. Her legs will never work unfortunately, the way she is now is the way she will be forever.

I had no idea what SB was, or hydro, before I found out about Tegan. I didn't know anyone with a child with SB or hydro, and I met the first person I did know just before Tegan was born on this very site

I think that through learning about other conditions, you realise that there is always someone who is far worse off than you are, and you become grateful for what you have. It took me a long time to accept that Tegan would never walk - and then I realised that there are children out there who will never speak. And I realised that, ya know, in this day and age, walking isn't all that important. She won't walk - so what, she'll have a wheelchair, and she'll get around, and she'll always have her mama to help if she needs it. If she couldn't talk, we'd accept it the same way, but thankfully she can. If she couldn't function on a basic level - that would be far worse than not walking. I am sure you understand what I mean

Yes i do, absolutely... it was only a week ago we were ruling out ever having a shunt, talked ourselves into it not being good but now we are coming to terms with things and just hope it doesnt get any worse where we will have to make new decisions. The decisions get harder the more things get worse I think.

 

[discoclare]

Sammy,
That is positive news today, I'm very pleased for you. Will keep my fingers crossed that everything turns out well.

 

[maybebaby3]

i am so glad 2 hear that u got some good news. i shall pray that your daughter makes good progress

 

[WW1]

It sounds like really promising news hun. I'm so glad it wasn't the "worst case scenario" you feared. Something to smile about I think!

 

[Sammy2009]

Thanks everyone for your support so far and just as importantly your prayers for her

We hope and pray this will have a happy ending... the news is good so far but there is a long way to go and a lot of worry ahead now.

I will of course keep you all updated on the scan next Tuesday (which i hasten to add i am dreading already!)

 

[dippy dee]

OMG hun i read the update with bated breath and i was in tears by the end of it, you have been in mine and my dh's thoughts so much and to see this good news and a glimmer of hope for you is amazing, i to could hit that first sonographer for you and i am possibly thinking that he should not of given his opinion in such a situation but should of possible suggested you speak to the nurses/consultant first.
I will continue to hold you close in my thoughts for Tuesday.


I would also like to say Tegans mum is amazing and gave me loads of support in the past and i am so glad she is here for you. xx

 

[Sammy2009]

OMG hun i read the update with bated breath and i was in tears by the end of it, you have been in mine and my dh's thoughts so much and to see this good news and a glimmer of hope for you is amazing, i to could hit that first sonographer for you and i am possibly thinking that he should not of given his opinion in such a situation but should of possible suggested you speak to the nurses/consultant first.
I will continue to hold you close in my thoughts for Tuesday.


I would also like to say Tegans mum is amazing and gave me loads of support in the past and i am so glad she is here for you. xx

Hi, I know that bated breath feeling, I think I held my breath for the first 10 mins of the appointment continually saying in my head "just get on with IT!" (you know how they ramble) lol.

The good news is that the valve is not blocked, its dripping out the fluid when it should be flowing freely and the fact that at the moment all the tissue is there and there is no brain damage. I just hope and pray so much that it just even doesnt get worse BUT if it does then next time after another scan maybe the valve might have grown a bit and it will start to release? We can't expect miracles right now, just bit by bit a little hope. They said that if things stay the same (60% chance of this and 20% it will start to drain off = 80%) then they cannot see any reason why she wont be a normal little baby) Thanks for your hopes and prayers

 

[Sammy2009]

Its all over... I cant type anything else, i have posted in miscarriage and loss to explain things

 

[ProudMum]

i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
That was 24 years ago x

 

[bigbloomerz]

Sammy I dont know what to say, I'm so upset for you right now, words cant describe what you are going through, but know we are all thinking of you and here to support you xx xx

 

[Sammy2009]

i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
That was 24 years ago x

I dont know why they cant do this with our baby... they said there would be more chance if it was a mild case but its severe... the increase just after 6 days is a lot... there is more fluid and her head has grown.

I think if it wasnt so bad they would offer us more hope, they said if it has stayed the same they could have brought her out at 34 weeks and drained it off but they think at the rate its increasing that she will suffer bad brain damage in the followinf weeks.

Im so glad your case turned out well... I have heard many more of these cases but they hold no hope for us, they said its too severe.

 

[Sammy2009]

I have asked OH to call the neurologist... she has 20 years experience and studied the MRI results... I want to hear it from her that there is no hope, that they cant bring her out earlier with some chance...

 

[ProudMum]

i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
That was 24 years ago x

I dont know why they cant do this with our baby... they said there would be more chance if it was a mild case but its severe... the increase just after 6 days is a lot... there is more fluid and her head has grown.

I think if it wasnt so bad they would offer us more hope, they said if it has stayed the same they could have brought her out at 34 weeks and drained it off but they think at the rate its increasing that she will suffer bad brain damage in the followinf weeks.

Im so glad your case turned out well... I have heard many more of these cases but they hold no hope for us, they said its too severe.

Mine was severe too, I also suffered bleeding on the brain afterwards too and given 2 hrs to live... look how wrong they were. I had no brain damage, no problems with speech, vision, learning... i was perfectly normal. Had to have hospital checks up until 5 years old but after that I was discharged and all was fit and healthy.
I actually just mentioned your situation to my dad- if youre advised to end the pregnancy I would seriously consider talking to as many specialists, drs,etc as you can... look what the odds were for me??? they were next to none, but they were all proven wrong and made to look stupid.
I wish you all the best

 

[Sammy2009]

Nobody can call us until tomorrow morning.... I dont know why they cant bring her out now... i am nearly viable. If i take the pill she will be born dead anyway, why cant we give birth to her now and give her a chance and drain off the fluid. They said she has no brain damage right now, why not give her a chance?

OH is going mad... he says that if she is brain damaged he will not stick around and its all over, that i'm gambling with his life as well. Why wont someone give her a chance?

 

[Gizmo]

Omgosh I seriously have no idea why bad things happen to good people
Your OH is scared... men have a different way of bonding and its usually at delivery whereas moms usually bond as soon as the pee sticks light up

The way I see it is that shes viable at 24 weeks and as long as shes a decent weight it would appear she has more of a chance on the outside. They can give drugs to mature the lungs, the problem would be infection from the the shunt.... whos to say she cant fight for herself... if its the only hope she has then cannot see why they cant come up with a plan.

 

[Gizmo]

I found a 22 week preemie on youtube with a happy ending

https://www.youtube.com/watch?v=Tql...8C644AA5&playnext=1&playnext_from=PL&index=11

 

[lfernie]

Hi,not sure if I shoudl post here but I just seen this post and wanted to say my brother has hydrocephelus (sp) and cerebal palsy and he was born at 26 weeks and Im not 100% sure (can't ask my mum she passed away) but i think he had hydrocephelus because he was born so early which in turn caused the cerebal palsy. He still has a shunt but maybe the safest place for your baby is still inside. (as i said I may be wrong) but and I hope everything go's well for you and LO x

 

[WW1]

I'm so so sorry you've had such bad news. My thoughts are with you x

 

[Sammy2009]

i was born with fluid on the brain.. obviously i had it whilst my mother was pregnant with me and i was born at 30 weeks, had the fluid drained and now im absolutely fine.
That was 24 years ago x

I dont know why they cant do this with our baby... they said there would be more chance if it was a mild case but its severe... the increase just after 6 days is a lot... there is more fluid and her head has grown.

I think if it wasnt so bad they would offer us more hope, they said if it has stayed the same they could have brought her out at 34 weeks and drained it off but they think at the rate its increasing that she will suffer bad brain damage in the followinf weeks.

Im so glad your case turned out well... I have heard many more of these cases but they hold no hope for us, they said its too severe.

Mine was severe too, I also suffered bleeding on the brain afterwards too and given 2 hrs to live... look how wrong they were. I had no brain damage, no problems with speech, vision, learning... i was perfectly normal. Had to have hospital checks up until 5 years old but after that I was discharged and all was fit and healthy.
I actually just mentioned your situation to my dad- if youre advised to end the pregnancy I would seriously consider talking to as many specialists, drs,etc as you can... look what the odds were for me??? they were next to none, but they were all proven wrong and made to look stupid.
I wish you all the best

Hi hun and thanks so much for your post it has inspired me and therefore I never took the tablets... I can't let her go this easily. I have made an appointment with the Neurologist at 4.15pm to discuss EVERY option. These are the people that I trust with her life not some jumped up sonographer/doctor (whatever he wants to call himself) pushing pills onto us. I have a million questions to ask and I want to give her a chance "against all odds" so thank you....

Meanwhile im still a frantic mess. OH has already stated if she has brain damage he is "walking" god you really get to know people when they say stuff like this. Her life is more important than my relationship so if he wants to walk then I guess he better get packing!

Does anybody happen to know... say we did bring her out at 24/26/30 weeks (we know we cant keep her in there for long due to the increase in fluid) and she suffered bleeding of the brain and was brain damamged, would they be able to check for this after she was born and would we be able to decide to take her off life support if this happened and we knew she had no quality of life or was suffering? I dont want her to suffer.... be kept alive for the sake of it and i'm scared they might tell us that its too late, we took the chance now deal with it! Today im scared but i feel stronger. I have stopped crying and now just want to be as strong as I can for her and try and make the best decision for her. If they wont help us, dont think it will turn out, have huge complications then I have to take that into consideration as I trust the advice of the neurologists we have and not the doctors at that hospital. The Neuro has 20 years experience so I feel safe with her.

Also, thanks for everyones advice and support it has meant the world to me when I dont feel that apart from my daughter anyone is backing me right now. Please continue to add any success stories and I guess stories that have not ended so well sadly as it will keep me grounded and try to help with the awful decision we have to make. Surely she will have a survival rate at 24/26 weeks... I am sure I have read of premature babies living at 23 weeks before, does anyone know of anyone that this has happened to and what were the final results? Thanks xxx

 

[bigbloomerz]

I think you have done the right thing hun, I had a word with my OH last night about what we would do, and he said he would stop at nothing to find out more information first, we havent had much luck with sonographers so far anyway, so going to the professionals is the best thing you can do.
Have still got everything crossed for you. xx Good Luck today xx