What support can we get for newborn babies infected with Strep B?

My baby girl, infected with Strep B, now has severe brain damage, inside and out. She had been in Evelina for 3 weeks for antibiotics since she was 3 weeks old. We are scared when told that she may not be able to speak, think or communicate. Neurologists asked us to wait and see but we cannot just stand and watch time go by without trying by stimulating her in any way we can to help her achieve her milestones. Can you suggest what we can do? e.g. What doctors should we see? What activities can we try at home and outside? Who has experience with babies in similar situation that we can learn from?

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  • I am so sorry to hear you news. I am sure you will get some good advice from the GBS volunteers but I have done a little 'trawling' of the internet for you. Our 1st grandchild had gbs and our 2nd has just come out of hospital after contracting e coli, (my daughter had iv pen G during labour to prevent him having strep B), so I have done what little I can to try to help. It might be a good idea to contact the meningitis wise helpline. They can provide local support, put you in touch with others in a similar situation and will know all about what services are available in your local area. The phone number for England is 080 8800 3344 and is open very long hours! Their website is meningitis.org . I hope you can get the information you need from them. I also came across this rather inspirational article which you might like to read (it's not very long), abc.net.au/2007-09-05/brain... An amazing national news report from Australia. I hope you get all the support you need to help you do your very best for your little girl. My thoughts are with you.

  • Hmmm, just tapped the link and it says article no longer exists but if you type 'brain damaged baby neuroscientist' into Google it comes up as the first item after the paid ads. Not suggesting you try the stuff they did but if they'd taken the doctors information as irrefutable, things may well have been very different for her.

  • I'm so sorry you've been through the hell of GBS and that your daughter has been left with a brain injury. I really empathaise with your frustration and desperate desire to stimulate your daughter in an effort to help her reach her milestones because my son has been left hearing impaired and visually impaired after GBS meningitis. He is delayed in terms of language and we've been told he has a behavioural eating disorder as a result of his time in NICU. Even after the agony of the infection itself, my biggest stress and pain is the endless unknown - will he speak normally at any point? Will he eat normally? What does he hear? What does he see? The incredibly hard reality is that no one knows the answer to these questions and we just have to wait. We work with a teacher for the deaf, a teacher for the visually impaired, a speech and language therapist and have five consultants monitoring him. Trying to find out what he can do and what help he needs is a full time job. I have no real solutions, just empathy. All I can say is, do what your instinct tells you and just be a mother - play with her, interact and speak normally and give her time to heal and show you what she will be able to do. And on the hard days when it really hurts, try to remember you are blessed because she is still here, too many GBS parents lose their children. And if you want to read our story just for shared experience, feel free to visit the blog which is walkingforadam.blogspot.co.uk Charlotte x

  • Hi nguyentueanh - I'm so glad you found this forum and know that you'll get great support from other families here.

    I'm so sorry to hear that your daughter has been so desperately ill and has problems as a result. As WorriedNanny suggested, the charities set up to focus on meningitis will be able to give you information about long-term effects and what can be done to ameliorate them. The biggest meningitis charities in the UK are:

    The Meningitis Trust meningitis-trust.org/ meningitis-trust.org/

    Meningitis UK meningitisuk.org/ 0117 947 6320

    The Meningitis Research Foundation meningitis.org/ 080 8800 3344

    All do slightly different things but all will be very keen to help you /point you in the right direction.

    I know that it is so difficult not to have definitive answers about how your baby will be affected longer term. Unfortunately, sometimes no-one has the answers to give, so watchful waiting is the only answer, but it's so hard.

    Do call us at GBSS if we can help in any way 01444 416176 or email us info@gbss.org.uk

    Hoping your precious daughter surprises everyone with a speedy and amazing recovery!

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