Any other parents with spina bifida child?

My little girl is 2. Was diagnosed at 20 week scan with myelomeningocele spina bifida. Mentally she's where she should be, if not more forward. She has an incontinent bladder and bowel, and cannot walk yet!
I catheterise her intermittently 4 times daily and just recently we now put an indwelling catheter in overnight. She's had an ongoing UTI infection for 4 months now. As a result of this she has inflamed kidneys, possible kidney reflux. She's had multiple different antibiotics. Still on a course. We've had a short stay in hospital recently. We just can't seem to get rid of her infection. Anyone else experiencing similar or has in the past? I'm quite worried. Concerned her kidneys will become damaged. 

Comments

  • FennoFenno Member, Moderator
    Hi Lanie 
    My name is Angie, I work at Contact. 
    Welcome to the community. I hope that other parents will be in touch soon. Just in case you don't know, just highlighting the charity Shine, here's a link to their website: http://https//www.shinecharity.org.uk/
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