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technofuture8 OP t1_iwjcqiq wrote

There's a youtube video in the article did you watch it, watch all 4 of them now? Also go through and read through all the comments here because I made other comments, I posted a link to an interview of the scientist who ran the trial in one of my other comments, I suggest you listen to the interview because you'll find the answers you seek.


widget1321 t1_iwjfm4p wrote

I read your other comments and looked at the interview and the videos. And, no, it didn't answer my question. I only really had the one question, which was why you thought she had a "really bad" case of spina bifida. The rest of my posts were statements correcting parts of your post that really didn't sit well with me.

The only thing I saw that indicated anything that could be interpreted as a "really bad case" of spina bifida, was that the kid had spina bifida myelomeningocele. Which, of course, they would only do the prenatal surgery at all on someone with SB myelomeningocele (unless you want to count SB myeloschisis as a separate thing, but that's really just a worse version of MMC where there is no sac covering the defect) because SB occulta wouldn't even show up that early. When you hear people talk about "spina bifida" they are almost invariably talking about SB myelomeningocele. Representing it as "a bad case" just because of that is misrepresenting things.

And I don't doubt this is likely to do great things. Again, I'm all on board with this procedure and with potentially doing related procedures on people who have SB and are already born (I'd sign my daughter up for a trial of that in a second). I didn't have any issues with what you said about its potential or that it's a great thing. I just had issue with how you represented the fetal surgery and the severity of the first child's SB (only because I can't seem to find anything that tells, for example, what part of the spine the defect was on, how big the ventricles in the brain were, or what other comorbidities there might be, which are the things used to diagnose the severity of SB MMC in the womb, so we don't KNOW the severity of the SB at this point other than it is MMC). That was my problem. You don't have to sell me on the treatment's possibilities, I'm bought in already. It's wonderful. But you didn't have to denigrate the amazing treatments (did you know there are multiple types of in utero repair for spina bifida? and variations on the two main types, even? it's not all the same surgery, though we lump them together, and they all have different advantages and disadvantages) that already exist. And you didn't have to oversell how bad the damage was to the child (again, unless you can point me to where they actually talk to the severity, in which case I'd retract that part), just having SB and qualifying for in utero surgery at all means the child was almost definitely going to have hydrocephalus and some level of paralysis, so the fact that they didn't is wonderful news, even without upselling how much damage there was.


technofuture8 OP t1_iwjhe5o wrote

The scientist in either the youtube vids or the podcast said that the baby was expected to be born paralyzed but it came out kicking it's legs and wiggling it's toes. Anyhow they're going to treat 35 babies so we'll see how they turn out. Hopefully it's world changing.


widget1321 t1_iwjlpqa wrote

>The scientist in either the youtube vids or the podcast said that the baby was expected to be born paralyzed

Yes, the baby has SB, the average person with SB is paralyzed to some extent.

>but it came out kicking it's legs and wiggling it's toes.

And that is wonderful. Hopefully they can see that with kids with high defects, but we will see how the study goes.


technofuture8 OP t1_iwjnrna wrote

Fingers crossed. They also hope this will cure the bowel and bladder problems too, as I believe that the surgery alone doesn't do much for the incontinence?


widget1321 t1_iwjpf9r wrote

It usually doesn't, no. I'm not exactly sure of the details, but because the nerves that control the bladder and bowels are so low on the spine, almost every SB kid will have issues with that. I don't know if it's because that location makes them easily damaged, if it's just because they are usually the first damaged, if it's that any damage above that point causes the issues, or something else (and the good that the current surgeries do for the paralysis is by preventing further damage to the nerves that would normally occur between surgery date and birth).

If this actually repairs the nerves, I wonder if that's true in reverse (so bladder/bowel would be least likely/last to be fixed) or if they might have cases where bladder/bowel issues don't occur, but you still get paralysis. I don't know enough to predict it at all, just wildly speculating and curious there.