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Hi, I'll try to keep this short

 

My son was born in 1997. They found he had enlarged ventricles in his brain on the 20 week scan and we were referred to a fetal neurologist. We were offered a termination but declined. The birth was planned to take place at the specialist centre so more tests and scans could be done after the birth. Unfortunately, circumstances meant he was born in our local hospital by emergency section. They did a head ultrasound but apparently the ventricles were back to normal.

 

We've been back and forth ever since, trying to get help with his various problems, but got absolutely nowhere. He's 13 years old now, but physically and socially he's a 5 year old. For the last 3 years we've been requesting an MRI scan. The paediatrician eventually gave in after I started emailing neurologists for help. He had his scan last week and it shows the enlarged ventricles are still there, and a bit of his brain is missing. The diagnosis letter says this is likely to be the cause of all his problems. We're now being referred to various specialists.

 

There is no cure, but early intervention can improve the long term prospects. Our son is likely to need intensive support for the rest of his life.

 

The first thing everyone has said is to see a solicitor, but is it reasonable? They know nothing about how it all works, and I know it's not as easy as going into court and saying the NHS did this, give me some money, but how does it work? I'd love to say it's nothing to do with the money, it's about justice, but actually it is about money. Last week, we thought our son might improve with some support from the right people, our lives could get back to normal, we could go back to working full time. Now we have to face up to this being it, our new forever, a forever that's very different because there was no early intervention.

 

We can safely assume the scan in our local hospital after the birth was wrong. Or can we? There's no way the ventricles could be normal sized with the bit of brain missing, and bits of brain don't just get up and go on a walkabout. I want to make sure I know all the tricks they can pull before we get into this.

 

We were aware there would be long term implications when we decided to go ahead with the pregnancy, but because nothing showed up on that scan we've had no help or support for 13 years. We've been offered parenting classes. Over the 13 years there's been at least 10 incidents that (with his pre-natal history) should have prompted an MRI scan, some of them should have prompted a scan even without his history.

 

I've made inital enquiries with 2 solicitors (one local with medical negligence in their list, one found on search engine), but is there anything we can be doing ourselves?

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Hi hybrid.

 

I read your account and then needed to do a bit of reasearch.

Does your son have a diagnosis for the enlarged ventricles in his brain? such as hydrocephalus........excessive fluid within the ventricles of the brain.

Or was it a problem with his brain development during your pregnancy?

It may help me to understand the fluctuations of the sizes of the ventricles you describe in the scans your son has had.

 

Check out the Headway website, Brain Injury Association, here


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Thanks, it's confusing

 

the condition is called ventriculomegaly, >16mm (classed as severe), they weren't able to check for further damage until after the birth, hence why he was supposed to be born at the specialist hospital ... he was diagnosed with this at the 20 week scan.

They had returned to normal size at his birth scan done at our local hospital

Last week he was diagnosed with Agenesis of the Corpus Callosum, and enlarged ventricles. Further tests will tell us whether it's hydrocephalus or they're enlarged because of the missing corpus callosum

 

The Corpus Callosum doesn't appear and disappear ... that would be the same as being told you had no arms, them growing back but disappearing again. The Corpus Callosum wouldn't have been there on the birth scan.

 

IMO: If they checked the size of the ventricles on the birth scan, the missing corpus callosum should have been spotted (they're right next to each other), especially if they were checking for further abnormalities as we were told. He has no symptoms of hydrocephalus, in which case the enlarged ventricles are because of the ACC (they've expanded to fill the gap), and they wouldn't have been normal sized at birth. The birth scan was done by someone without any neuroradiology training ... our local hospital doesn't do neuroradiology hence why we had to travel to see a specialist

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Hi hybrid.

 

This sounds very much a rare birth defect presenting during the development of your sons brain during your pregnancy.

You say that only last week you found out that your son had Agenisis of the Corpus Callosum. This seems very late to be told!

(The Corpus Callosum is the important structure that connects the 2 halves of the brain.)

You are right in saying that it should have been visable on a scan at birth and I presume you are still under the care of a Neurological Consultant.

This consultant should be answering some of your unanswered questions.

PALS at the hospital you take your son for consultant visits should be able to help you to get further information.

 

Are you aware of the Corpal support website? here


Keep up the fight against Bank Charges.

 

 

Got Debt problems?

Don't panic, put the kettle on and read this

 

:-) Everything I write comes from my heart and head! The large filling cabinet that is my knowledge of life, however warped that may be!! :-)

 

<<< Please tickle my star!! if I have managed to help you or just made you chuckle!

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It was Corpal that encouraged me to keep pushing for an MRI scan ... we suspected ACC because of his symptoms, for 3 years an MRI scan has been refused because there's no way his current difficulties could possibly be related to his brain development, after all, the ventriculomegaly cleared up. Everyone we got in touch with, even a research assistant looking into long term effects of ventriculomegaly took one look at our son, or read his symptoms and they'd suggest an MRI scan. His clinical psychology report shows some areas of performance at 99th percentile, others on 1st percentile, yet they decided the results weren't significant so no scan was needed.

 

The only professionals my son has seen for 13 years are a paediatrician and clinical psychologist ... he was discharged from neurology when the ventriculomegaly 'cleared up'. There have been no follow ups at all for the ventriculomegaly. We've been referred to a neurologist now, and lots of other specialists (heart, eyes, hearing, genetics, ...) but that critical period for early intervention passed a long time ago. The trick here is to go on the waiting list for one specialist, see them then go to the bottom of the waiting list for the next specialist so it could be a while ... it wouldn't suprise me if the neurologist came last). If I hadn't researched ACC myself, got in touch with Corpal and some leading neurologists, and demanded the scan, we'd still be in the dark.

 

The paediatrician has only been interested in the symptoms related to the Autistic spectrum. Anything else was irrelevant. He did check for hypermobility once. Our son can't stand on one leg, but has never been seen by physio or OT. It's as though 'he's not quite autistic this year, we'll wait another year and see if he is then'. Our primary concerns have always been his physical delays and incontinence, and whilst there might be links to ASD, they're certainly not central issues in ASD.

 

I've checked our PCT website for details of PALs and can't find anything? I'll keep looking, but is there anywhere else to find them? I want to tread carefully ... our son might get some support now, he'll need to see the same CP, and we'll still be under the same paed. He'll be under the hospital now rather than the child development centre, but it's still the same consultants.

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ok, I've found the number for PALS and left a message for them to contact me.

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Hi hybrid.

 

Ventriculomegaly doesn't "clear up"!!

It is a condition where the ventricals in the brain, the spaces filled with cerebrospinal fluid, are larger than normal for whatever reason. I believe that their size can fluctuate depending on the normal drainage levels of cerebrospinal fluid.

As this was picked up on your 20 week scan it should have been investigated fully from the birth of your son and monitored closely.

Did your son have chromosomal testing done when he was born? you should have been informed about it being done.

Any increase in the size of the ventricals increases the pressure put on the brain and if the levels are high and not treated can cause death of brain tissue leading to loss of certain functions.

 

Well done for getting an appointment with PALS. Take a friend with you.

Write down what you want to know before you go, and keep calm!

 

Glad you found the Corpal website for support and further advice.

 

Good luck with your PALS appointment.


Keep up the fight against Bank Charges.

 

 

Got Debt problems?

Don't panic, put the kettle on and read this

 

:-) Everything I write comes from my heart and head! The large filling cabinet that is my knowledge of life, however warped that may be!! :-)

 

<<< Please tickle my star!! if I have managed to help you or just made you chuckle!

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Hi again

 

We had chromosome testing via amniocententesis. I recall the main concern being Turners syndrome. The results came back that he was a boy (Turners only affects girls) so I don't even know whether they did anything further than a boy / girl check. He's had blood taken recently for karotyping (before the scan results), if they've only done another XY check, I'll chase that up.

 

Most, if not all, of his delays can be blamed on the ACC. The ventricles can expand inward to fill the gap left by the ACC, so them being enlarged isn't necessarily worrying. The gripe with them is missing it all on that birth scan ... if they'd done the scan properly (and I can't see how they possibly did the scan properly to have missed it), he'd have had support, early intervention and the situation would have been monitored, instead we've been made to feel like we're at fault for not bringing him up properly. Star charts to stop incontinence ... when we now discover his brain can't process star charts and the incontinence isn't even his fault anyway.

 

I'm good at staying calm ... my husband is the one who's about to lose it.

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It must be a real challenge for you trying to understand his understanding of the world around him. A learning process for you both!

 

I really hope that you get the answers and the support that you and your son needs.

 

Maybe don't take your husband to the meeting unless you have him gagged with gaffer tape!!!


Keep up the fight against Bank Charges.

 

 

Got Debt problems?

Don't panic, put the kettle on and read this

 

:-) Everything I write comes from my heart and head! The large filling cabinet that is my knowledge of life, however warped that may be!! :-)

 

<<< Please tickle my star!! if I have managed to help you or just made you chuckle!

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Just a quick update

 

GP is referring us out of area, and we're going through the complaints process with ICAS.

 

Been in touch with some 'no win, no fees'. All of them say liability and negligence of the birth scan will be easy to prove, NHS wouldn't even deny it, BUT they all want to do a life time care claim. The claim would be the difference between his disabilities if he'd been diagnosed correctly at birth and undergone therapy / special education etc, and the disabilities he has now. There's no evidence that early intervention makes any difference. We're only interested in the damage done over the last 13 years, but the no win no fees see the big money and that's too risky.

 

ICAS have told us (informally of course) to keep looking. If not, once we get through the complaints procedure and some sort of admission, we can make a claim on our own and go through county court if necessary:!:, keeping only to actual provable losses (loss of earnings, but no psychological damages). We have until he's 21, so there's obviously no rush, going to put it on the back burner whilst we deal with the complaint and some other stuff

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hybrid - the fact is if you go legal on this it will be for a big claim - as potentially this kind of scenario could lead to a massive (seven figure) payout based on life time care costs .

 

if you find a good and experienced with high value cases medical negligence solicitor and they are willing to take the case on they would be looking towards the full care costs type of settlement and there are significant numbers of Medical negligence solicitors who do deal with this high value cases as unfortunately sub optimal care doeshappen and you will never eliminate t hese kinds of circumstances totally.

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Just a little update.

 

It's now almost 4 months since his diagnosis. GP has decided against referring to a specialist and paediatrician has decided the recommended tests are unecessary.

 

Our younger son has now been diagnosed with sensorineural hearing loss. The audiologist (in a different health authority) who fitted his hearing aids noticed some dysmorphic features (in both boys) and asked lots of questions about family history. He was shocked when we mentioned the ACC. Anyway, our younger son has had a brain scan and lots of other tests, but unsurprisingly anything going through our own health authority is causing problems. The audiologist requested hearing tests for the whole family, our GP ordered them for me and my husband (not the other children), but as we've passed he's put a stop to the genetics referral. The MRI scan results seem to have 'gone missing' or the people that can access them 'aren't qualified to discuss them'. We see the audiologist again in January, we're praying he's able to refer to genetics over our GPs head.

 

ICAS have split our complaint into 7 different complaints. Is this right? I though we could just send a big one to the health authority and let them sort out who's responsible for what. I'm not sure I can cope with chasing up 7 different complaints. Our health authority has recently been slammed by the CQC, complaints handling was a big part of it, but a number of services have also been put on notice to improve (maternity, outpatients).

 

Regards

Hybrid

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I hope you are not doing this all on our own? Get legal help and it will take a lot of stress away.i had a claim that i started in jan 2000 settled in 2007,it is not a fast process but a very thorough process..I hope you get what you are seeking..There are some amazing solicitors/barristers out there for med/neg.

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ICAS are helping us with the complaint, we're not going to think about legal action until we've seen genetics.

 

We've got our first response about the complaint (it's one huge complaint again) ... I sent recorded delivery and they've lied in their response about when it was received (statutory time limit to respond is 2 days, they took 5). They're going to do a full investigation, but need us to sign off on consent for them to share information with a third party. Is that normal? As far as I know, this is between us and the PCT, not sure what 'third party' needs to be involved? I'm so suspiscious of anybody now ... are ICAS really totally independant?

 

I've been doing some reading and suspect the 3rd party might be MPS (insurers / solicitors type thing) ... bad Google! If that's the case, do we need to be getting a solicitor in on this now, or is ICAS enough?

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I'm new to this forum so apologies if I'm preaching to the converted, but have you tried AVMA for advice?

 

I too am suspicious of all these 'advisory' bodies and my first thoughts are where the funding comes from for such large organisations, but I think AVMA are independant. A quick google will pull up their website.

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