My daughter's story and brain injury, where do I get help?

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littlegoatgirl
littlegoatgirl Online Community Member Posts: 2 Listener
in Cerebral Palsy Network
 my daughter is 6 months old. Healthy oregpregn until a growth scan at 38 weeks showed ventriculomegaly. 

She was born in a very poor state with strep B sepsis, pulmonary pressure hypertension, thrombocytopenia, sepsis suspected meningitis, has kidney failure and pnumonia causing collasped lungs, and then was diagnosed with cCMV. Double unlucky.

She's alive and kicking but her MRI results show cysts, calcifications, moderate/severe measurements of ventricles, microcephaly and suspected polymicrogyria. She had a brain bleed due to strep B sepsis (the medication they had to out her on keep her alive) and a heart condition because of the stress of being so sick. 

We treated the cmv with retroviral medication, to hopefully save her hearing and stop calcifications.

She is very present, physically strong and apart from a little weakeness on her right side is a healthy little girl.

I don't know where to start with support I am at a loss at where to begin with bodhi. We have a physiotherapist who is happy with her progress but I don't feel like I am doing enough. 

We fully expect cerabal palsy and epilepsy.

Where do I go for support? How can I get more help? Anyone who can point me in any direction other than the clueless state I feel I am in please feel free to respond.

I ahvent claimed for Bodhi as I have to move everything to universal credit, I am bi polar and off medication so I can breast feed. I have been signed off for years. I also have no idea what to out on a form for myself or my daughter. 

I've been looking into all-sorts of treatment for bodhibut we are not rich. 

Has anyone got any experience with birth injury and court? We were consultant led birth and they sent me home with sepsis. I told them things were off I am lucky my daughter is alive.

Comments

  • Richard_Scope
    Richard_Scope Posts: 3,780 Cerebral Palsy Network
    Hi @littlegoatgirl
    Thanks for your post and a very warm welcome to our community. It really does sound like you and your family have been through a lot. Firstly, although you do not feel it, I'm sure you are doing all you can. 
    Waiting for a diagnosis can be one of the hardest times as a parent. You are able to claim for Bodhi, 

    Here is the link to the DLA ‘how to’ pack https://contact.org.uk/media/1172324/claiming_dla_for_children.pdf

    Here is some more information from Scope

    Parent Guide https://www.scope.org.uk/support/families/parents-carers

    Cerebral Palsy https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy

    Talking to your GP about any additional support you may need might be a good starting point. In addition, you might be interested in the Family Lives Helpline, they can support with a range of emotions that result from the challenges of family life:  https://www.familylives.org.uk/how-we-can-help/confidential-helpline/

    I will also include some links to some of our benefits discussions

    What benefits am I entitled to


    I hope that information is useful. Please stay in touch.


     



  • Charliep
    Charliep Online Community Member Posts: 2 Listener
    Hey. 
    My son suffered left cerebral infarct which I believe was due to stress during labour, was pretty rough!! He now has cerebral palsy among other things. We went through a solicitors took a year for them to tell us we wouldn't be successful. I am not giving up! It is free to do. Go online and search no win no fee medical negligence solicitors. You can only try right? I do believe it takes years I am trying to pluck up the courage to go through every detail again with an adviser as you probably know it's difficult to think of those bad times in special care x

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