Hydrocephalus - Our baby has now been born - Birth Story on page 18

[evie_smith]

that is terrible i feel so sorry for what you are going through hun x x x x x x x x x x

 

[Laura_C]

Oh my gosh hunni, i have just read through this thread and i cannot begin to understand what you are going through. I am so sorry you are having to go through this ordeal, I think the way you have been treated is totally disgusting. I think if I was in your position I would do exactly the same, I am just not sure I could take those pills, but having never experienced this I couldn't say for sure. Its not a decision anyone should be left to make, and definately not the uninformed way they expected you to do so.

I think you are a wonderfully brave person and a fantastic mummy to be fighting for your precious little one the way you are.

Thinking of you at this difficult time x x x

 

[Tonks]

Perhaps you should give the hospital a ring that I linked to before? The one in London. At the very least they will take your call, and maybe get someone to ring back. Best case scenario, they offer your baby treatment. Worst case they can advise you over the phone of where to get help

 

[lealea]

If you were in the UK, your baby would most like be delivered as soon as she was viable if her hydrocephalus was bad enough to cause brain damage.

I saw a 25 week preemie get a shunt on the same ward that Tegan was on. There is hope for your child, if its not in Holland its elsewhere, but you have to believe that for it to be true. The standard of care in the UK is higher than anywhere else in the EU for neurological problems. I'd give you the number for my hospital if you wanted it.

If you needed NHS treatment, you wouldn't even need to ask for it. You could turn up, in A&E in a hospital in the UK, with a copy of your notes and you would be given treatment.

I was talking to someone earlier, and I said then that it is so hard for me to stay objective on a subject that I hold so close to my heart. That's why I haven't commented on this thread recently. If you really wanted to jump the barriers, you could, but you have to believe in it.

You say she's a huge risk since she's so sick. Yes, she is sick. But, she isn't dead. If she isn't dead, there is always someone, somewhere, who can try their best to make her better. Your baby would probably stand a far better chance in a hospital in the UK where they specialise in these things. For one, my hospital wouldn't refuse you treatment. My hospital has saved the life of a hell of a lot of children with hydro. I know a 15 year old girl, whose hydro is so severe she needs two shunts, but she has no brain damage. She's still sat there. Because she has a good team of doctors.

 

[katiejane]

Sammy you continue to amaze me with your strength. I really admire you for your fight on behalf of your daughter. This might seem a bit random but does anyone know of any charity organisation or anything like that which could help sammy come over here and get the care she deserves, it seems madness to me that in Holland they are not prepared to give a baby every possible chance to have a life, such a basic human right. This is such a touching story and there must be someway to get proper treatment if you want to continue your fight x

 

[xxsammyxx]

This is just a nightmare!!

 

[Mervs Mum]

So sorry Sammy. Have you got an appointment for the termination now? I know you were reluctant to take the tablets to stop her heart but if you have really made your mind up that this is it, it does seem cruel to put her through the stress of labour knowing that short of a miracle, she will die. Sorry if that sounds harsh. Labour is traumatic for babies. If they are right and you are going through with it, perhaps it would be kinder to limit her suffering.

 

[laura dec 1988]

you are such a strong person.... big hugs and take care xxxxxxx

 

[Lovisa]

I can not think of the words right now but like i said before "What they have done is wrong.
There isn't much more I can say that others haven't. I know nothing anyone can say or do will stop you hurting"
Keep strong and hopefully you know we are all thinking of you and sending you our love xxx

 

[xxsammyxx]

If you were in the UK, your baby would most like be delivered as soon as she was viable if her hydrocephalus was bad enough to cause brain damage.

I saw a 25 week preemie get a shunt on the same ward that Tegan was on. There is hope for your child, if its not in Holland its elsewhere, but you have to believe that for it to be true. The standard of care in the UK is higher than anywhere else in the EU for neurological problems. I'd give you the number for my hospital if you wanted it.

If you needed NHS treatment, you wouldn't even need to ask for it. You could turn up, in A&E in a hospital in the UK, with a copy of your notes and you would be given treatment.

I was talking to someone earlier, and I said then that it is so hard for me to stay objective on a subject that I hold so close to my heart. That's why I haven't commented on this thread recently. If you really wanted to jump the barriers, you could, but you have to believe in it.

You say she's a huge risk since she's so sick. Yes, she is sick. But, she isn't dead. If she isn't dead, there is always someone, somewhere, who can try their best to make her better. Your baby would probably stand a far better chance in a hospital in the UK where they specialise in these things. For one, my hospital wouldn't refuse you treatment. My hospital has saved the life of a hell of a lot of children with hydro. I know a 15 year old girl, whose hydro is so severe she needs two shunts, but she has no brain damage. She's still sat there. Because she has a good team of doctors.

Hi hun,

(I'm still not giving up!) OH has just called me and asked me for the link to this forum so he can print your message off and take it with us to the hospital tomorrow morning.

I have spoken to him about this and I cant see the logic in just letting her die if she is born alive... Please can you send me any information, telephone numbers... anything at all so I can send them to Allan at work and he can print them off (we have no printer at home) Thanks xxx

If anyone else can find any links, newspaper articles, cases where they have read in the UK that a baby has been born at 24/25 weeks and been treated then I would be more than grateful to you... I would like to take as much information as I can to the hospital tomorrow and talk to them about this and call the UK hospitals to find out what the options are there. Thanks x

 

[Mervs Mum]

If you opt to be induced tomorrow though that will be for a termination so they wont work on her will they? In the UK they would work on her regardless as I understand it. Unfortunately my friend SIL had a medical termination and the baby was born alive so they had to work on her legally. She did die because she was only about 22 weeks but because she showed signs of life they had to do something.

If you're talking about bring her out and wanting them to work to keep her alive surely she's best left in there till she has to come out? I dont see the difference?

Gosh your head must be all over

 

[Mamafy]

I'll see if Lea is around and get her to look at this thread

 

[titch]

http://www.specialchild.com/archives/dz-018.html some really interesting personal stories on this webpage, they are all american, but a baby is a baby wherever it is born, posted because the first personal story is about a child born at 26 weeks.

Good luck xxxx

 

[laura dec 1988]

That story just made me cry....how lovely just shows were there is a will there is a way. hope this link posted by Tiny gives you some hope Sammy and good luck hunni xxx

 

[lealea]

The number for the hospital my daughter was born at is +44 (0)114 2711900 . You'll need to speak to a consultant (our consultant was Mr Farrell). I have no idea how they will handle it, but it is worth a try.
Tegan's treatment is at Sheffield Childrens Hospital. The number for the hospital is +44(0)114 2717000. If you need any advice at all into what will happen when your baby is born etc, I am here.

 

[katiejane]

Just having a quick look on google, found this, baby born at 23 weeks in 1998 with hydrocephalus and although i've not read the whole website i can see its honest rather than all rosey, they've had struggles but he is still alive and very much loved. Don't know if this will help x

http://www.ryanspage.org.uk/

 

[Tonks]

Also, hospitals in the UK have parents rooms or apartments where you can stay short term until you find somewhere yourself. It doesn't have to be living out of a hotel, and I am sure there are organisations that can help you find temporary accommodation.

Also, here are some hopefully helpful links for you

http://www.hydrosupport.org/hydrocephalus-stories.html
http://www.dmoz.org/Health/Reproductive_Health/Pregnancy_and_Birth/Premature_Babies/Personal_Pages/
http://www.specialchild.com/archives/dz-018.html

 

[Tonks]

Also, hospitals in the UK have parents rooms or apartments where you can stay short term until you find somewhere yourself. It doesn't have to be living out of a hotel, and I am sure there are organisations that can help you find temporary accommodation.

Also, here are some hopefully helpful links for you

http://www.hydrosupport.org/hydrocephalus-stories.html
http://www.dmoz.org/Health/Reproductive_Health/Pregnancy_and_Birth/Premature_Babies/Personal_Pages/
http://www.specialchild.com/archives/dz-018.html

 

[xxsammyxx]

Ive just got back from town.... I bought two little cuddly baby rattles, one for me and one for my little girl to keep and play with in heaven (if after calling the UK and Belgium to see if they can help us) I dont know how I managed to get around town without falling to pieces but somehow i did. I was a mess and kept walking round in circles missing all the shops I needed to go in. I feel frantic. We are supposed to be at the hospital at 3pm tomorrow. I bought a plastic cast kit to taek some prints of her tiny hands but i dont know if i can do this... I dont know what to do. I keep going into denial about this. She was kicking me so hard on the way home and it started to hurt my stomach to walk further. I hoped I would slip on the ice and land in a way that would bring me into labour so that I could go there and say "Look im in labour spontaneously and so now you have to treat her when she comes out like you promised, ventilate her, put her on life support. But it never happened... knowing my luck I would probably break my leg instead or something instead. I looked for some clothes that would fit a baby of 400g but they would have all drown her... i tried to imagine if the little hats would fit but i knew they wouldnt.

 

[xxsammyxx]

Also, hospitals in the UK have parents rooms or apartments where you can stay short term until you find somewhere yourself. It doesn't have to be living out of a hotel, and I am sure there are organisations that can help you find temporary accommodation.

Also, here are some hopefully helpful links for you

http://www.hydrosupport.org/hydrocephalus-stories.html
http://www.dmoz.org/Health/Reproductive_Health/Pregnancy_and_Birth/Premature_Babies/Personal_Pages/
http://www.specialchild.com/archives/dz-018.html

Thanks i have emailed this to Allan and will have a look myself as soon as i get chance xx