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technofuture8 OP t1_iwhfjwj wrote

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

So in California they decided to try surgery with stem cells. They performed the standard surgery but added stem cells to the baby's spine. And according to the scientist running the clinical trial the early results are highly encouraging!!! 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.

So what kind of stem cells did they use? They used placenta derived mesenchymal stem cells. The placenta comes out of the mothers womb, the placenta actually comes from the developing fetus not the mother, the placenta is typically thrown away but it turns out there are mesenchymal stem cells (MSCs) that can be harvested from the placenta, that can be used as medicine.

So what are mesenchymal stem cells (MSCs)? MSCs are found all throughout everyone's body actually, in fact all mammals have MSC's in their bodies. MSCs aren't just taken from the placenta they're also frequently harvested from belly fat, bone marrow, and the umbilical cord. MSCs act as a quarterback that directs other cells what to do when the body suffers an injury, they can even control the immune system. Mesenchymal stem cells (MSCs) don't turn into any new tissue, they don't replace damaged tissue, what they do is they home to areas of inflammation and start secreting microscopic molecules (about the size of a virus) that stimulate the body to heal itself. These molecules that MSCs secrete are called exosomes. Every cell in your body is secreting exosomes into the bloodstream, it's one of the ways cells communicate with each other. Even cancer cells secrete exosomes.

If you go on PubMed and enter "mesenchymal stem cell" you'll get back over 80,000 science papers, so research into MSCs is booming right now. Also if you go on PubMed and enter "exosomes" you'll get back tens of thousands of science papers, research into exosomes is booming too.

Mesenchymal stem cells (MSCs) don't have to be donor matched believe it or not. There are over 200 clinical trials in the USA that are using MSCs and over 1,000 worldwide currently. MSCs are not yet approved by the FDA but I think that will change in the coming years. MSCs can treat a bunch of different diseases actually. Umbilical cord/placenta derived MSCs tend to give the best results according to scientists, MSCs taken from the umbilical cord/placenta are super young and are supercharged basically.

p.s. Listen I know Joe Rogan ain't too popular on Reddit but I thought some of you might find this interesting. I first learned about mesenchymal stem cells thanks to Joe Rogan. Joe interviewed Mel Gibson back in 2018 because apparently Mel flew his dying 92yo father down to Panama where it's legal to get umbilical cord derived mesenchymal stem cells. According to Mel Gibson his father's recovery was miraculous!!! And I've been obsessed with MSCs ever since, I think it will revolutionize modern medicine as we know it (if only the FDA would approve it). Mel Gibson's father died at 101 but the umbilical cord MSCs are probably the reason he didn't die at 92. This is just the first ten minutes the whole interview is on Spotify

https://youtu.be/uUCJo1j0S9s

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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.

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DMCinDet t1_iwixnut wrote

Good friends of mine had this surgery around 12 years ago and it was definitely cutting edge at the time. I'm not so sure about 20. She had to travel across states and was their third patient there.

Overall, glad to hear there is progress being made to prevent this for the future. Or provide a better outcome.

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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).

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DMCinDet t1_iwj6tbs wrote

Right on. Thanks for the info. They travel in state still to see the neurologist that performed the surgery.

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fawn-the-annihilator t1_iwj9882 wrote

Thank you for this. My 9 year old has SB and a lot of this didn't sit right with me either. What you said is spot on. Fetal surgery is doing incredible things for those who are able to have it done. Unfortunately we weren't eligible, but it is absolutely life changing for those who are. I'm looking forward to further advancements with stem cell technology!

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technofuture8 OP t1_iwjd20r wrote

I want you to read through the other comments here because I posted a link to an interview of the scientist who ran the clinical trial. The hope is these stem cells will literally cure spina bifida and the bowel and bladder problems. They are going to treat 35 babies in total and they'll be watched for 6 years.

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n3rdchik t1_iwlcsxa wrote

I was surprised they didn’t mention the hydrocephalus component as well. I can’t wait until the journal articles hit and we see some quantitative data. Also what the tethered cord surgery rate is.

My son has SB and this is kind of a nice bit of sunshine as I am dealing with some school issues caused by people’s unkindness and ignorance over his SB issues

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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.

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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.

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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.

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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.

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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?

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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.

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sayidOH t1_iwho4tl wrote

Science is very freaking cool

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technofuture8 OP t1_iwhonwt wrote

I think umbilical cord/placenta derived mesenchymal stem cells will revolutionize modern medicine, if only we could get these mesenchymal stem cells into every hospital in the USA, we gotta get the FDA to approve these stem cells!!! Exosomes are pretty revolutionary too.

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wolfgang784 t1_iwi5h81 wrote

B-b-b-but the placenta is good cookin !

/s, but people really do fry em and eat em.

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Tsk201409 t1_iwhuj9e wrote

Great information!

Joe Rogan is a lying piece of shit.

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Drews232 t1_iwj5dve wrote

And Mel Gibson’s father is the original insane fundamentalist, holocaust denying racist that raised Mel to be just as big an asshole.

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FairPumpkin5604 t1_iwigj3f wrote

Fascinating… does the donor placenta have to be a certain “age”? Like, does it matter how developed the fetus is? Could MSCs be collected from placentas from miscarriages or abortions, for example? Or only from birthed babies? (PS- I am NOT trying to start ANY sort of ethical debate here. I am honestly just curious about the “requirements” for viability/ harvesting.)

*edit- for clarification

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visualtim t1_iwjltzr wrote

I've worked with placentas and umbilical cord MSCs.

Typically they're from C-sections, as that's the most clean way of procuring. Before the scheduled procedure, they'll ask the mom if she'll donate the placenta and cord. There's a huge consent form and they take "no" very seriously.

Anyways, the tissue will be sent in for pathogen testing. Cord is already used for cord blood banking. And parts of the placenta are being tested as healing patches for burns and stuff, in which case it's dried and sterilized.

No on the miscarriages and abortions.

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Pickledicklepoo t1_iwka3an wrote

And here I am sliding them into a trash bag and then lobbing them into the placenta bucket in the placenta freezer so they can go to the placenta fire each day

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comicsnerd t1_iwiyeae wrote

As someone with Spina Bifida, I just want to mention that not every form of Spina Bifida will result in paralysis. There are many forms.

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hangliger t1_iwiv9n3 wrote

So if I'm understanding this correctly, we have stem cells that exist anyway at the time of birth that we can probably use right away to fix defects?

Seems like a no-brainer unless there just isn't enough quantity and you need to go collecting hundreds to make this viable. But even then, could be promising.

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walruswes t1_iwhni08 wrote

Do they use the placenta from the “patient” or use the placenta from elsewhere?

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technofuture8 OP t1_iwho4uu wrote

They used a placenta for the mesenchymal stem cells from a donor. MSCs don't have to be donor matched actually. In fact I could take mesenchymal stem cells (MSCs) from out of your bone marrow or belly fat and multiply the MSCs in a bio-reactor and then inject them into my body and there would be no immune rejection, I'd be fine.

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visualtim t1_iwjkqhp wrote

Not true; there's still host vs graft for most allogeneic transplants. Stem cells may evade the immune system for a couple of weeks, but that's it.

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technofuture8 OP t1_ixv9prn wrote

Did you know that mesenchymal stem cells are currently going through clinical trials for graft vs host disease? MSCs can literally modulate the immune system. This company right here is pioneering MSCs created from induced pluripotent stem cells and they've already conducted a phase 1 trial for graft vs host disease using their IPSC derived MSCs, and the results were amazing. At the two year mark 60% of the patients who received the MSCs were still alive, compared to, usually only 17% would be still be alive when treated with the standard of care.

https://www.cynata.com/graftversushostdisease

​

What I said was correct. MSCs don't have to be donor matched. Allogeneic MSCs have been administered to thousands of people at this point. For those who are wondering allogeneic means "not from self".

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