Hi, my name is littlegoatgirl! This is about my daughter — Scope | Disability forum
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Hi, my name is littlegoatgirl! This is about my daughter

littlegoatgirl
littlegoatgirl Member Posts: 2 Listener
edited July 2018 in Start here and say hello!
Hi, 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

  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Thanks for sharing @littlegoatgirl you should hear from some folks who may be able to help you in right direction. How are you managing your bi polar btw? You also mentioned strep B, is that the infection that can be vaccinated against but it’s not routinely done yet? I’m asking because I heard about a petition to get the govt to make testing during pregnancy compulsory. I might be talking about something completely different. Was wondering when you were leaving hospital did they follow through with referrals to community services for your family? They may be able to help you access welfare rights of other services for you. Good luck 

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