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.


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.


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.


widget1321 t1_iwj6fg1 wrote

The very, very first one was done at CHOP in 1998. The MOMS trial (the first systematic, randomized trial to look at outcomes of the surgery, there were 3 or 4 surgical centers in the trial) started in 2003 (there were something like 200 surgeries before MOMS, but they weren't systematically compared to other children with postnatal repairs at the same time). The MOMS trial ended early in 2010 or 2011, because it was so successful and at that point the surgery started branching out into other places beyond the trial. That would be around the time your friends had it done, so it would still be considered very cutting edge at the time (since so few surgeons actually could do it), but there were surgeons who had been doing it for over a decade at that point.

It's right at the point now where many places think of it as the standard of care of the mom/child qualify, but a lot of places (especially if not near one of the centers that does it) still recommend postnatal surgery. Lots still think of it as cutting edge these days.

Complicated surgeries that are tricky and take a lot of time to learn take a while to get away from the cutting edge because there just simply aren't enough surgeons at first. It's been amazing to watch the rates that people do this increase (particularly at the center we did it at, which was new at the time).


widget1321 t1_iwiogvr wrote

I want to push back a little bit on some of this. Note that I think this stem cell trial is great and any hopeful about the outcomes, but I really didn't feel everything you said was completely correct (or, at the very least, misrepresented some things).

>Spina bifida is a horrible birth defect of the spine that leaves babies born paralyzed and have bowel problems. In the past ten years they started performing surgery on the baby, while still in the womb,

While it's been a lot more common in the last 10 years, the first of the fetal repairs was 20 years ago, not 10.

> while this helped the babies' outcome it didn't help a whole lot, many were still paralyzed with bowel problems.

This is one I have a real issue with. It absolutely helps a whole lot. For multiple reasons. One, paralysis, bladder, and bowel function are definitely much improved on average from what is expected (because of the details of the defect, there is a wide range of outcomes for kids with spina bifida myelomeningocele who have the same "level" of defect, characterized by where the defect is on the spine, so it's not like you can differently say before birth how a child will be, but after surgery has much better outcomes). Two, to many, that's not even the most important part. Hydrocephalus (caused in no small part by what is called a Chiari malformation type 2) is a big issue that affects most SB kids. This surgery helps prevent that from getting worse after the surgery and I know a number of kids who definitely would have needed a shunt in their brain at birth who either haven't needed surgery at all or were able to delay surgery until a safer surgery that didn't require something being put into the brain was able to be done. So, it's absolutely been very effective. It just isn't perfect and this technique with the stem cells has the potential to have even better results.

>The first baby to be treated with stem cells had a really bad case of spina bifida and was expected to be born paralyzed but it seems the stem cells did the trick, the baby came out of the womb kicking it's legs and wiggling it's toes.

Where did you see she had "a really bad" case of spina bifida? All I've seen hasn't indicated exactly what her case looked like, just that they expected some level paralysis, which is absolutely the norm for SB. If you can find something indicating details, I'd love to see it. If not, maybe don't make it seem like what sounds normal for SB is particularly bad.

Not trying to be harsh, my guess is you just aren't as familiar with SB (you seem to be attracted to this because of the stem cell angle, which is fair), so trying to clear things up. I've learned a lot about SB over the last 3 or so years. My daughter had the fetal surgery. She was not a particularly bad case, but her surgery stopped her hydrocephalus from getting worse (which it was every day until the surgery when it stopped growing at all until she was a few months old) and we were initially told to expect paralysis up above the knees or higher, but hers starts around her ankles after the surgery.