Hi, my name is danielorr41! — Scope | Disability forum
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Hi, my name is danielorr41!

danielorr41
danielorr41 Member Posts: 8
Hi I'm wondering if anyone on here can help me and my partner.
She is currently 31 weeks pregnant at our 20 week scan we were told that our baby had large ventricles and we were sent for a foetal MRI, we were told by the radiologist that it was a poor prognosis as the right side of the brain had been damaged, ? Stroke ?bleed.
The obstetrician referred us to a neurologist who told us slightly better news and he expected our outcome to be mild/moderate learning difficulties and probably a one sided weakness.  He referred us for another MRI at 28 weeks which we went for. When it was reviewed by the neurologist and radiologist they found that there was thickening at the back of both parietal lobes as well as the damage to the right hand side of the brain and the prognosis was that the baby would probably have severe neurodisability cerebral palsy and epilepsy that is difficult to control and probably be wheelchair bound.  We have had an amino last week that showed no abnormalities as well.

I would like to know if anyone has had a experience like this and what the outcome was as doctors are asking if we would like to continue with the pregnancy or not.

Thanks for any advice or help you can give us .

Comments

  • bam
    bam Member Posts: 326 Pioneering
    That's really really scary. Good luck to you. I really hope everything turns out great
  • abstractLucas
    abstractLucas Member Posts: 76 Connected
    We didn't know about my son's issues until he was born because lots of red flags were ignored/not noticed/explained away, so in trying to look on the bright side at least it sounds like the medical professionals are being very thorough.
    As to whether you want to continue with the pregnancy - that has to be a decision that you and your partner make.  If you feel the doctors are putting on to much pressure, try and ask them to give you some space.  Haso anyone offered counselling about your choices? ARC (Antenatal Results and Choices) offers lots of neutral info about your options - their website is here http://www.arc-uk.org, and they have a telephone helpline which you and your partner might find useful too.
    Hope you're doing okay.
    Lucas
  • danielorr41
    danielorr41 Member Posts: 8
    What issues has your son got I'm only asking aso booked in for termination tomorrow?
  • danielorr41
    danielorr41 Member Posts: 8
    They have been very thorough and helpful we just feel now that we are  out off option so for ourselves and the baby and there is no way forward 
  • abstractLucas
    abstractLucas Member Posts: 76 Connected
    My son has a unique chromosome disorder - a genetic fluke which means he has severe learning difficulties (can't hold a pen, let alone read or write aged 15), uses a wheelchair, has very little speech, and has several health issues - haemophilia,  epilepsy, heart abnormality, hypermobility syndrome, dislocated hips etc etc etc!  I love him very very much, but he goes through a lot every single day.
    I hope all goes as well as can be expected tomorrow - I know that this must be an awful experience - I will be thinking of you.
    Lucas
  • ang
    ang Member Posts: 13
    Thinking of you both and hope you are both well x
  • danielorr41
    danielorr41 Member Posts: 8
    Our heart is with you but looking at what you have put we feelwware making the right decision as heart breaking as it is 
  • abstractLucas
    abstractLucas Member Posts: 76 Connected
    I absolutely understand - I'm sorry if I made you feel I was criticising your choice - I honestly didn't mean it like that, I can see this is something that you have given a lot of thought.  I hope that you will have the chance to say a proper goodbye to your baby tomorrow and, like I said, I'll be thinking of you.
    L.
  • danielorr41
    danielorr41 Member Posts: 8
    I didn't think you were critiscing at all what we are doing is wht we think is best for the family and what we can copen with as we have a 6 year old boy and don't want to put him under the pressure off constart hospital visits 
  • abstractLucas
    abstractLucas Member Posts: 76 Connected
    I understand. I hope everything goes as well as it can tomorrow. 

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