Tethered spinal cord

[TheNationalExpress]

My nearly 1 year old DD has a tethered spinal cord and it has been recommended by her neurosurgeon that she has surgery to untether it and remove fatty lumps causing the tether in the next six months.
The surgery will last a day then she will need to be in hospital flat on her back for five days. Full recovery from surgery will take another 4-6 weeks.
I'm extremely nervous about this, it's such a big operation for such a little person. Has anyone's little one had similar tethered cord surgery and if so do you have any advice / words of support?
I'm terrified of something going wrong.
At the moment my little one is showing no symptoms of tethered cord but I believe the surgery is more effective before symptoms show.
Thanks so much for reading, I hope someone has an experience they can share with me.

I don’t have a child with a tethered cord, but I didn’t want your post to go unanswered.

I do have experience of hospital stays. Having lots of little things you can whip out when DD begins to become unsettled will help. Make use of the play specialist if the ward has one. A notebook and snacks for you will help too.

It's not something that I've heard of before. Have you tried posted on Children's Health as well?

The SN Boards don't usually show up in the active threads so you may get more responses in there

I don't have expectations of tethered cord (yet) but it is something that we need to keep a look out for. My son has Spina bifida, Hydrocephalus and Chiari II malformation, which can cause tethered cord.

Not on the same scale, but he has had 2 trips for neurosurgery, the first at 24hrs old for closure surgery for his Spina Bifida, and the second and 5 days old to insert a vp shunt for his Hydrocephalus. I know they're more resilient as newborns, but he recovered beautifully each time. If it weren't for waiting for an MRI and feeding issues, we probably would have been home in around a week post second surgery.

Good luck to your little one and wishing her a speedy recovery x