Hydrocephalus - Updated with: Our Birth Story on Page 14

[WW1]

I'll be thinking of you tomorrow x

 

[Tegans Mama]

Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.

Good luck for tomorrow.

 

[jess_smurf]

will be thinking of you x sort of understand the devastation you are going through

all my love

jess xxxx

 

[FitzBaby]

my heart is just breaking for you. you and allan are in my thoughts and prayers. i cannot imagine what you are going through but i am amazed at how strong you are. you are an inspiration and thank you for so generously sharing your story. much love and hugs to all three of you!

 

[dippy dee]

Aww sweetie i've just popped on to see how you all are and i am so sorry you are still waiting for results etc, my heart goes out to you and Allan and your dd. xx

 

[Sammy2009]

Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.

Good luck for tomorrow.

God when I read your posts it makes me so mad.... not because of you hun but because I think you tell us more than the hospital do and they are supposed to be our main source of support here! I explained to them once that I had spoken to a lady on a forum (when they were giving me all this "there is little hope" crap) and I told them that not every story ends up like a text book. They agreed but why isnt someone telling us that things MIGHT be ok??? Why have they written her off already almost? OK, i know im venting because im upset and they are probably waiting for the MRI results... they are probably looking at them as I type this... I just dont know what to think at the moment.

You know you said about the brain folding, please could you explain this more to me? I would like to know everything I can so I can ask them this tomorrow and then let you know and you can tell me what you think... it seems you are more informative than they are at the moment. It would have been nice if they could have told us things like this that they would be looking for!

 

[Tegans Mama]

Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.

Good luck for tomorrow.

God when I read your posts it makes me so mad.... not because of you hun but because I think you tell us more than the hospital do and they are supposed to be our main source of support here! I explained to them once that I had spoken to a lady on a forum (when they were giving me all this "there is little hope" crap) and I told them that not every story ends up like a text book. They agreed but why isnt someone telling us that things MIGHT be ok??? Why have they written her off already almost? OK, i know im venting because im upset and they are probably waiting for the MRI results... they are probably looking at them as I type this... I just dont know what to think at the moment.

You know you said about the brain folding, please could you explain this more to me? I would like to know everything I can so I can ask them this tomorrow and then let you know and you can tell me what you think... it seems you are more informative than they are at the moment. It would have been nice if they could have told us things like this that they would be looking for!

Well, first of all, all brains which function correctly have folds like this - that is just a drawing, but I didn't think you'd appreciate me showing you a real life brain
The brain of all fetus' have to develop those folds. Until I was quite far into my pregnancy, my baby didn't have those folds. That's the type of brain damage that Hydro normally causes, a lack of those folds. Because of the pressure the fluid in the ventricles causes, sometimes those folds are only able to develop to a certain extent. Sometimes they develop normally (most do) and sometimes they develop late, which is what Tegans did. They may tell you that your child has very little 'brain matter' - Tegan didn't have much, and they completely wrote her off like they have your LO. We were told she'd be a vegetable, she would have no quality of life, etc etc.
Ask as many questions as you can - and demand answers. If they are flippant with you, and if you come away feeling like you don't know enough, I would really recommend getting a second opinion.

One thing I will say though, is that if you do decide to continue with your pregnancy, you will have to fight for your child. I did - at every appointment, they offered me a termination. The last straw was when I was offered one at 32 weeks. You have to tell them to put it in your notes not to ask, or they do.

And please, PLEASE don't let your husband make this decision for you. I promise you, that regardless of how much you love your husband, if you make the wrong decision, you will end up resenting him, and it could ruin your relationship.

Oh, and about the shunt ... Tegan has a shunt. She's had it since she was 8 weeks old, and whilst her first one DID go wrong, that was because she had an infection elsewhere. Most of the kids with hydro I know have had one shunt thats been there since birth. Tegan's 16 months old now and we've never had a problem with her shunt. And regarding temperature rises - for the first six months, yes you may be taken to hospital with a high temperature, but everything else will be eliminated first. If your child has a fever along with a runny nose, they won't think its the shunt. And after six months - the risk of infection is more of less 0.1%. It doesn't happen all that often. With a normal shunt blockage, the temperature does not rise

 

[EternalRose]

Hi Sammy,

I was going to say as well that it is a good sign she was reacting to the noise even though it was uncomfortable for her. I have my fingers crossed for Wed, that you get some good news. I said a little prayer last night for you xx

 

[Sammy2009]

Like I said on the other thread, it is a very good sign that she showed a reaction to the noise of the MRI. That means her brain is functioning at some level. Hopefully tomorrow they will tell you that her brain has shown signs that it is starting to 'fold'. My daughters brain was 'smooth' (none of the folds that characterise a normal functioning brain) until I was about 25 weeks along. Her brain was a little slow to develop - but it did, and although at first she had very little brain tissue because of the pressure, her brain developed regardless.

Good luck for tomorrow.

God when I read your posts it makes me so mad.... not because of you hun but because I think you tell us more than the hospital do and they are supposed to be our main source of support here! I explained to them once that I had spoken to a lady on a forum (when they were giving me all this "there is little hope" crap) and I told them that not every story ends up like a text book. They agreed but why isnt someone telling us that things MIGHT be ok??? Why have they written her off already almost? OK, i know im venting because im upset and they are probably waiting for the MRI results... they are probably looking at them as I type this... I just dont know what to think at the moment.

You know you said about the brain folding, please could you explain this more to me? I would like to know everything I can so I can ask them this tomorrow and then let you know and you can tell me what you think... it seems you are more informative than they are at the moment. It would have been nice if they could have told us things like this that they would be looking for!

Well, first of all, all brains which function correctly have folds like this - that is just a drawing, but I didn't think you'd appreciate me showing you a real life brain
The brain of all fetus' have to develop those folds. Until I was quite far into my pregnancy, my baby didn't have those folds. That's the type of brain damage that Hydro normally causes, a lack of those folds. Because of the pressure the fluid in the ventricles causes, sometimes those folds are only able to develop to a certain extent. Sometimes they develop normally (most do) and sometimes they develop late, which is what Tegans did. They may tell you that your child has very little 'brain matter' - Tegan didn't have much, and they completely wrote her off like they have your LO. We were told she'd be a vegetable, she would have no quality of life, etc etc.
Ask as many questions as you can - and demand answers. If they are flippant with you, and if you come away feeling like you don't know enough, I would really recommend getting a second opinion.

One thing I will say though, is that if you do decide to continue with your pregnancy, you will have to fight for your child. I did - at every appointment, they offered me a termination. The last straw was when I was offered one at 32 weeks. You have to tell them to put it in your notes not to ask, or they do.

And please, PLEASE don't let your husband make this decision for you. I promise you, that regardless of how much you love your husband, if you make the wrong decision, you will end up resenting him, and it could ruin your relationship.

Oh, and about the shunt ... Tegan has a shunt. She's had it since she was 8 weeks old, and whilst her first one DID go wrong, that was because she had an infection elsewhere. Most of the kids with hydro I know have had one shunt thats been there since birth. Tegan's 16 months old now and we've never had a problem with her shunt. And regarding temperature rises - for the first six months, yes you may be taken to hospital with a high temperature, but everything else will be eliminated first. If your child has a fever along with a runny nose, they won't think its the shunt. And after six months - the risk of infection is more of less 0.1%. It doesn't happen all that often. With a normal shunt blockage, the temperature does not rise

I have replied to the other thread.... no, ive told him we have to make this decision together... I think we can do that, its the decision itself that will the hardest. I guess we just have to see the results but all you information has given us some comfort, strength and hope (even if we are feeling less than positive right now, we are trying to hold on to a little hope) Allan asked tonight if you can see the shunt, I told him where it was placed and the hair normally grows over it. I dont want to push the idea onto him as i know by past experience he has to accept situations at his own pace. I have explained the good and bad about the shunt, sometimes there are problems and sometimes there arent. He knows he can ask me at anytime and I will explain. The doctors will also be able to do this tomorrow, he seems to listen to them more than my instincts which worries me sometimes as I have told him they dont know everything and they are not always RIGHT! Thats why I ask him to read what people write on here... to read real life examples of these situations... to see what people have been told and its not been all doom and gloom. I think if a doctor told us that our child would be brain damaged severely and we took the chance and she wasnt there is a small chance that particular doctor would not live to see his next patient to be honest. Allan has already said if the first sonographer is wrong he is going to go back there and kill him Of course, this never happened because the baby's condition was confirmed. I would have been over the moon if he was wrong, i would have just been happy that everything was going to be ok

 

[maybebaby3]

my heart goes out to you. i hope you get some good news tomorrow

 

[Tegans Mama]

At 16 months old, Tegan's shunt is invisible to anyone who doesn't know its there. Of course you can feel it, but no, you can't see it.

Doctors more definitely aren't always right. They have been wrong at every step for Tegan.

 

[Sammy2009]

Hi Sammy,

I was going to say as well that it is a good sign she was reacting to the noise even though it was uncomfortable for her. I have my fingers crossed for Wed, that you get some good news. I said a little prayer last night for you xx

Your so kind... you all are. We dont know what we would have done without your support and well wishes AND prayers. The little bit of faith I have in God will be used tonight to pray for our daughter tonight..., pray for some miracle or just some hope would be a start right now. Nerves are fraying and we are arguing about the results we dont even know yet. I guess its the pressure of tomorrow. We are trying to stay strong but jesus you know I would not wish this upon my worst enemy. I dont react well or strong in these situations, i screamed and sobbed when I was told my dad had died unexpectedly in October... the rest of the people in the office had to leave the room as it was too distressing for them to watch my pain. I dont want to crack like that again... but this will be worse if they say we have to lose her. I am so scared. I dont know what to do. I dont know how I will even get there being in the car for 1 hour.... every hour is a hurdle right now. God its so painful.

 

[Emma1980]

my friend had this and was advised to abort the pregnancy - she refused and her bouncing baby boy is perfect! not a sign that there was any issues in pregnancy at all...

I wish you all the best hun xx

 

[FitzBaby]

thinking and praying very hard for you tonight. the best of luck tomorrow. much love sending your way to you, your oh and your bubs...

 

[Sammy2009]

my friend had this and was advised to abort the pregnancy - she refused and her bouncing baby boy is perfect! not a sign that there was any issues in pregnancy at all...

I wish you all the best hun xx

Thanks for telling us that... I am going to let Allan read this in a minute. Your comments are a big help to us

 

[Tegans Mama]

Sammy... you have so much hope. I can sense it. You want this baby so badly Its such a horrible thing to go through, I wouldn't wish it on anyone

 

[Sammy2009]

thinking and praying very hard for you tonight. the best of luck tomorrow. much love sending your way to you, your oh and your bubs...

Thanks hun, I just feel sick with worry....Ill be glad when tomorrow is over.

 

[Sammy2009]

Well this is todays update...

We left this morning for the hospital... there were no words in the car, we were too wrapped in our own thoughts I think, trying to cover our reactions for every possible scenario. I managed to keep myself together though I felt like I was going to pass out with all the worry.

We arrived on time and we were seated in a small room waiting for the experts at 11am. At 11.10am they turned up. There was 3 of them, one was a Neurologist, one was a level lower than that (I guessed he was only there for experience as he never really participated in the discussion) and then another lady who had discussed our results with the neurologist.

They started the conversation with: "First of all we woulld just like to say that before we start explaining the results, you are not obliged to make any decisions today" My first thought was "well that means its going to be bad news then!"

Then they started to explain what was happening.... she drew a picture of the brain and said there was a small tube in the middle of the brain, the good news its not blocked, its too narrow. It is releasing fluid but not enough and therefore there is a build up of excess fluid putting pressure on her brain and therefore the ventricles are enlarged. There are no signs of bleeding or any other things out of the ordinary happening which is also good news.

After the MRI they discussed the results and "at the moment" there is no brain damage, the brain tissue is normal, there is the correct amount and if things stay the same they are not expecting anything (brain, motor skills) to be affected and said there is no reason that we shouldn't have a healthy baby. The baby's head is not enlarged at the moment, its in the normal range but top end of the scale so the slightest increase could take it over the abnormality stage but on the whole things are looking good on that front. Of course its not quite as simple as that and so;

The chances are this:

There is a 60% per cent chance that things will stay the same and if this happens then the baby will not experience any brain damage (although there are no direct guarantees, they do not foresee any problems after close monitoring) However, after the birth they will obviously have to drain the excess fluid and this can be done in two ways:

1. A shunt can be fitted above the ear, underneath the skin where the hair will grow over and will drain directly to her bladder and she may need this for life. There is a 3-5% chance of complications and infection with this procedure and can sometimes fail and need repeating. This is normally performed a few weeks after birth.

2. There is a new procedure just been brought out which is where after birth they can laser a small hole in the faulty (narrow) valve in her brain and therefore this would drain all the fluid as it should, she will not have to have a shunt fitted as this will solve her problem. The risks are: There is only a 50% chance of success in babies of 6 months or less. There is a chance it could cause bleeding to the brain although this is not all that common. There is a chance the operation won't work and in this case they will fit the shunt instead at the same time to save the baby having to have two operations. At a later date there is a chance they could repeat the operation of the laser to try again but they consider this as not very nice for the infant if a perfectly working drain is already in place. Its not ruled out though and it is possible to try again at a later date if the first time is unsuccessful.

There is a 20% chance that the fluid will increase and if this happens then its not good. We will be over the 24 week mark for ending the pregnancy at this stage so we would have to look at options of maybe draining the brain while she is unborn (results are normally fatal sadly) or bringing her out at around the 34 week mark. If things got a lot worse and she would be severely brain damager we would not want her to live her life like this and would have to approach another country to end the pregnancy as Holland will not let us go past 24 weeks. We have discussed all the options on this as we are not (and hope never to be) facing that problem right now.

There is a 20% chance that the value might widen and grow and that the fluid might drain off completely and if this happens all will be normal and nothing affected and she will be as a normal as any other baby could be with no further treatment required. This doesn't happen very often and the neurologist said that she maybe only sees this happen 2 or 3 times a year in that hospital, there is roughly a 2:10 chance.

I asked about whether the brain folds had formed yet and she said it was too early for this at 22 weeks, in any baby they would not be formed at this stage so its something they will monitor for the future. They also told me that they checked for another thing, I cannot remember the technical name, its not normally present in females and she is clear of that. They also checked for something else that Hydro can cause which is where the pigmentation is affected and blobs of coffee like spots appear throughout the body (this is not health affecting) but she doesn't have any signs of that at the moment (and hope she never will have either though this is not serious at all)

So, for now, they want to scan me in a week and see whats happening... if the head has grown, fluid levels, change. After that they will scan me every 2-3 weeks depending on the results each time. We have another scan on Tuesday 5th January @ 9:00am. We were asked if we wanted to have these scans at our midwife place or continue with the professional hospital in Leiden but since the midwives cannot even book us a successful appointment we decided there was no need for discussion and that we wanted to stay with the team of experts where they have the best equipment and professional people. We trust and feel safer with that hospital.

There is nothing more we can do at the moment but pray and hope and try to keep some faith. For the first time in as long as I can remember we can breath a small sigh of relief and hope things improve over the weeks.

Personally, I am really mad with the first sonographer we had in Capelle who first picked up this problem 2 weeks ago. When I asked what would happen to my baby he told us "They will probably end the pregnancy to be honest" I feel this was unprofessional and insensitive and if her wasn't experienced to have "known" the options he should have never sent us through the hell we have just been through thinking there was no hope! But we have to keep our strength for the coming weeks and hope for the best really.

What do you think?

 

[Tegans Mama]

They said exactly what I thought they would. The EXACT same thing they told us about Tegan. EXACT.

I really hope the outcome helps you make your decision. It is NOT!!! all doom and gloom, like I said. I am so sorry they were wrong at the first scan - and I hope you are happy that the odds of your baby being healthy are higher than the odds against it. I am so sorry that I'm not speaking coherently here - I am very happy for you, BUT I absolutely friggin hate the way they treat people who find out their child has hydro before they find out how serious it is.

 

[Tegans Mama]

They offered to do a third ventriculostomy for Tegan (the hole) but we refused, as it has a VERY low success rate in under 6 year olds. The brain heals. The best bet at such a young age is always a shunt, unless the CSF (cerebro spinal fluid that causes hydrocephalus) is infected, then they will do an EVD (external ventricular drain) where the fluid drains into a bag outside the body.

Honestly, I am so, so SO happy for you. That is good news. The verdict you got is probably the best that you could have. We had a 90% chance for brain damage with Tegan. You have a 40% chance with your LO. In my eyes, that is fantastic.