# Cortical Dysplasia



## curvycat (Apr 8, 2008)

Hi all 

Feeling a little low and so please excuse my rambling 

Also a little warning for the newbies as I dont want to be a voice of doom maybe best not to read further

Ok....

We have been linked to a gorge lo and despite all the warnings have completely fell head over heals. Planning room, future and dreaming of our future 

Lo was found through bmp and it did say she had cortical dysplasia but when the sw and ff came to see us they said lo had no issues and docs had discharged. We knew there was some risk but were reasured nothing to worry about. All reports v possitive and we were confident that this was a great link on an emotional and practical level

We were delighted when they said they wanted us and have been really possitive as have had great experience with lo's sw so far but.....

a report sent from fc mentioned lo's "under lying brain issues" when questioned it was the cd and hyperplasia. I asked some nurses I know and noone knew anything of it until yesterday when a peadiatric nurse warned me how bad this can be 

when I got home I did the dreaded thing and googled it! symptoms can be: Epilepsy, Autism, ADHD, retardation, loss of motor skills, severe delay and more 

We are not meeting with Medical advisor for a few weeks yet and we are in bits! I have cried for pretty much 24 hours and hubby is also completely lost

We do not feel we can back out of this match as we have bonded with lo but we dont know what to do! We never expected a perfectly healthy lo but we definately did not expect so much risk of issues

I called our sw today and she spoke to there medical advisor who has said can not give us any advice till after meeting and more info and as much as we understand this is the sensible thing we do not know how we will be able to cope for the next few weeks 

We can not believe how hard this is and just how damaged these lo's are    I question if we can cope with going through this again 

Noone prepares you or can prepare you for this and after reading so many cpr's and even more profiles and having to say no to 2 other sets of children I am lost in the desperation 

I know that CD is very rare but have any of you any experiences that could shed some light on this situation 

with thanks as always


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## Old Timer (Jan 23, 2005)

Hi CC

Firstly, ((((((HUGS)))))) I can hear how upset and worried you are by this news.

I have no experience of these issues but wanted to say this (as tactfully as possible):-

Take as much time as you need, explore these issues and find the worst case senarios, speak to pediatriacians/specialists and ask for the most honest prognosis you can get.  If after hearing/researching everything you don't feel able to take on all the risk DON'T.  

Adopting a child is stressful, it is emotionally hard and you face many challenges that families with birth children wouldn't even consider and that is with a healthy child!  You have to be honest with yourselves about what you can deal with, what your family can deal with, what would happen to the child if anything happened to you (could a family/friend cope with the issues or would the child end up back in care?).  

A lot of people back out of links before matching panel, new info comes to light or something just doesn't feel right, and then go on to find the right child.  Yes, you feel you have a bond with the child you thought you were reading/being told about but you now have conflicting info that changes that child and what your future would be like, it is painful to let go and move on (having just experienced this myself) but it is far better to be honest and do that before matching panel than find after the child has moved in that the issues are far too great for you to deal with and you either becoming ill, resenting the child or having a disruption which would be horrendous for everyone involved.

Don't let anyone pressure you into this match, get as much info as you can and then make an informed decision together using your head rather than your heart.  Be totally honest with each other and if one of you doesn't feel able to cope then the match isn't right.

Its such a difficult situation to be in, made worse by wanting a family more than anything and I really feel for you.

Good luck whatever you decide.
OT x


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## curvycat (Apr 8, 2008)

on a practical level I agree with you OT but on an emotional level I just dont think we can 

hubby and I have discussed this and we just feel that we have opened our selves up to this lo and are commited to caring for her 

this sounds just too melodramatic but I feel bereaved


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## Essex Girl (Apr 3, 2005)

Hello Curvycat

I hope you don't mind me butting in on this thread. I don't know about cortical dysplasia specifically, but I have come across a range of children with different disabilities and conditions through having a child with a disability myself.

You don't say how old the child is. With a lot of special needs conditions, there is a range of severity, and nobody can tell when a child is born how severe their disability is likely to be, or how they are going to be affected by the condition. It only becomes apparent with time. When advising you about a decision involving disabilities, the professionals have to tell you the worst case scenario, but most children will not be that bad. If the child is older than a baby, you will begin to get some feeling as to how he/she differs from other children of the same age, for instance in development or health, and that should help you to get a feel of how they may be.

The best people to tell you about living with the condition are other parents of children with it, although inevitably their views and advice will be coloured by their child's experience to date. Is it possible for a SW to arrange for you to contact a support group or a family who can talk to you about it?

Parenting a child with special needs can be very rewarding and/or very difficult. There can be very big practical difficulties if the child has medical or behavioural problems but there are various support services and you will be referred to these if the child comes to you. Even without those sort of problems, having a child with special needs is likely to involve more input than other children, attending appointments and needing to do more for them. But it can be very rewarding.

The bereavement reaction is quite common with parents of children with special needs - you are grieving for the loss of the 'perfect' child that every parent wants. There is a piece called 'Welcome to Holland' which describes the process of coming to terms with the fact that your child is different - I think there's a link to it on the Special Needs board which I will find for you in a minute. Speaking personally, the bereavement reaction gets less with time, but every so often something reminds you that your child is not the same, especially in a mainstream environment.

It is not an easy decision, especially when the long-term outlook is unknown, but do take time to find out as much as possible, and 'live' with the idea for a while. I suspect you will either develop a gut feeling that you don't feel it is for you or that you will take it on and deal with the challenges as they arise, and if you should decide it is not for you, please try not to feel too bad about it.

If I can help with anything further, please come back to me.

All the best with your decision
Ruth (Essex Girl) x

Here's the link: http://www.our-kids.org/Archives/Holland.html This piece appears on a lot of special needs sites.

/links


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## Old Timer (Jan 23, 2005)

Unfortunately CC you do have to be practical as well in these decisions.  

We have just spent the last 6 months being told a baby girl was ours, got very attached emotionally without meeting/seeing her, even more so when we saw her photo only for the link to be broken due to the location of the birth family, something SS had known for the whole time but had said was fine.  We already have a son via adoption and he 'knew' something was going on which has made it all harder to deal with.  However, we will pick ourselves up and we will find the right child for our family but it does have to be 100% right.  

So I totally understand how hard it is when you have an emotional attachment and we have grieved for the family we had in our heads and hearts, its not been easy especially as at the moment time wise we would have been bringing her home today, but its getting easier.

As I said, do your research, speak to people (see if there is a support site where you can get some real live experiences), speak to your SW and anyone else you need to in order to get to the decision thats it right for you.  Also you may want to think about whether you will want to expand your family after?  The needs of this child may be too great for you to be able to do that.

We have family experience of FAS/drug and Downs and it is hard work but it can be so rewarding, the children are lovely but we have turned a child down based on our experience of FAS/drugs which if we hadn't had that knowledge we may not have.

Lots to think about and questions to ask.
Good luck
OT


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## wynnster (Jun 6, 2003)

So sorry to hear about this CC 

I totally agree with OT that you HAVE to think with your heads on this, it is very hard to let tell your heart to take a back seat, I know, but you must also think about what is best for LO and if you are not 100% able to parent her if the worst case scenario was to happen then perhaps you are not the right family for her after all 

However having said that, the people who know her best is the FF, perhaps she is developing normally? and for the hospital to discharge her she must be doing very well.

In the next few weeks while you are waiting for the appointment, find out as much as possible (regardless of how awful the condition sounds!!) Ask your sw if you can speak to the medical advisor they use, go to the library and as horrid as the searches maybe, look on the net. Make a list of all the questions you have.

In the meantime - have a look at this: http://www.epilepsy.com/discussion/979189

Thinking of you 

/links


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## Camly (Dec 12, 2006)

hiya curvycat

i didnt want to 'read and run'. unfort i dont have any advice but think what the other ladies have said is very good.  the only thing that i can say - which is no where near the medical condition you are talking about etc - but i remember when we heard about our 2 little girls that we were abit 'wary' about a few of their 'medicial issues'. what is sometimes written down is soooo different than the reality.  just wanted to let you know that i am thinking about you and your dh whilst you are going thru this time.

take care

xxxx


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## curvycat (Apr 8, 2008)

thank you all for your advice and taking the time out to send us a reply

I have spoken to the lo's sw today and I am reasured that lo has a mild case of the condition and as much as there is still risk we are prepared to accept this and deal with things as they come. Lo's sw is amazing and has been very honest with us and really seems to care for our lo and she is confident that the last time lo saw the Nurologist he was very confident that she would only be effected in regard to movement.

I also spoke to a pead consultant who felt that although lo is very younge she was actually exceeding some milestones that he would use as markers to monitor the condition 

We have asked to see lo's consultant and an apointment is going to be made for us and we will be going to see the medical advisor with a list of questions 

all this being said we are more convinced than ever that this lo is our lo and feel totally commited to parenting her what ever her needs may be


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## Old Timer (Jan 23, 2005)

CC

Good to hear you have had some reassurance regarding lo's condition and feel more positive that you can cope.

Good luck
OT


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## Boggy (Dec 13, 2006)

HI CC


I've been away for a week, so have only just seen your post and update.  Just sending you a hug   , you've had some great advice and I'm glad things are looking more positive for you now.   


Bx


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## thespouses (Jan 5, 2006)

Can I just ask, does this child already have a diagnosis of epilepsy too? I know this condition can be very variable and manageable or very severe and not really manageable at all, but all I know about cortical dysplasia (I've heard of it through my work which is very slightly related) is that it is only usually found when a child has already had fits?


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