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Tethered cord

2 replies

AnEnglishLadyOfACertainAge · 23/01/2025 07:17

My nearly 12 month old DD has a tethered spinal cord and surgery to release the cord has been recommended for sometimes in the next 6 months. I'm finding the thought of her surgery and recovery really difficult and upsetting, and I wondered if anyone has any experience of their little one having this surgery.
It has all been explained to me, the rationale for the op, the op itself, the recovery, but I'd love to be able to hear from someone who has been through it with their little one. It's all I think about at the moment and it's making me feel pretty inward and depressed, whereas I would like to be feeling calmer about it, and grateful it's happening to give her better chances with the spinal cord not causing her issues etc in the future - although I know the surgery doesn't guarantee anything, but I'm finding it hard to muster the positivity when thinking about her surgery and recovery. I'm terrified something will go wrong.

OP posts:
BlackSwan · 23/01/2025 20:44

No advice for you but perhaps FaceBook may have groups with parents whose kids have the same diagnosis & have had the same surgery. I have found FB really helpful in that way.

AnEnglishLadyOfACertainAge · 25/01/2025 10:09

Thanks BlackSwan, I'll give that a try. Desperate to leave facebook but there are lots of useful communities on there!

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