First in-utero stem cell therapy for fetal spina bifida repair is safe: study

Completely agree, this is why we need to detect bad rolls and give people the ability to reroll.

Sadly, the divorce rate is over 50% for parents of spina bifida children. My daughter is almost 7 and my wife and I are happy, we have a good life and I’m fortunate to have a career that lets her stay at home to tend to our daughters multiple monthly doctors appointments, and one where I can largely work from home to help when she needs carrying (which is often!)

That said, our daughter is a miracle, she’s intellectually sharp, and we do everything we can to give her all the experiences any other bright and outgoing child would have. I hold her up so she can play the games she can’t reach at Dave and Busters, even if my arms get tired. We go on hikes with an expensive stroller that’s also a bike made for off road biking because we read Little House and she wanted to know what prairie looked like. We plan on getting an RV to take her to national parks.

Her wheelchair tennis coach recently tried an exoskeleton that allows him to walk at a research lab in New York, she was elated. She asks me when her robot legs are coming. I tell her we don’t know but robots in every house would certainly help that sort of technology move forward. I tell her “they’ve got to test it on adults before kids can get one!”

When she was one, they told us to make plans for the future, to get our affairs in order. Three years later the palliative care worker who had told us our child wouldn’t live past her second birthday came to visit us during a hospital visit and talk to us, so happy to see a case where they’d all been wrong. I’m so happy they were.

I think the largest issue with health care right now is that the US is artificially shrinking the supply of Doctors. This is due to:

1. Size of medical school classes not increasing with population

2. US has an artificially small amount of residency slots.

These are largely due to AMA lobbying afaik and bad bills. But if we allowed every qualified medical student to enroll, and gave a residency slot to every graduate. In a decade we would have really shrunk the gap.

Does that really happen "any time you go to a doctor's office"?

That aside, what if novel therapies like this are linked to the fact that US healthcare is expensive? If you make it cheap -- as in other countries -- there's less incentive for companies to invest and you get less research and fewer breakthroughs. Also fewer doctors, hospital beds, and more rationing.

In an ideal world, everyone would have exactly the right amount of healthcare. But our world isn't ideal, it runs on incentives, and it's not clear to me that all the hand-wringing over US healthcare will lead to positive changes.

The US is a country of cowboys. There is literally nothing that can be considered fair. The only thing what is left is the kindness of it's people. If that detoriates, well...

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The notion of "stem cells" are somewhat of a misnomer as modern biotechnology is showing us. There are an orchestration of probably 1000s of different cell types which can vary in their cell states. We don't have enough knowledge of how to use these various cell types to influence complex self-organization processes like development. But in some cases there are clever fixes without understanding the underlying process.

Best news is the stem cells used are from donated placentas. So no political footballs, just a true blessing to a child.

The first episode of the Surgeon's Cut [0] on Netflix shows a doctor:

- operating in utero

- while the mother is awake

- in an outpatient/doctor's office setting

- to implant a balloon in the upper respiratory tract of a fetus with a, I believe, cleft palate so that it's lungs can develop normally.

It really is wild what modern medicine can do these days.

0 - https://www.netflix.com/title/81004466

Not only is it possible, fetal surgery is more or less standard treatment for spina bifida at this point. The news here is about the stem cell patch being applied during the surgery. (I have a child with spina bifida. We tried to get her into this trial, but did not qualify.)

  The CuRe Trial is exploring whether stem cells can add regenerative power to surgery, potentially improving mobility and quality of life.
  
  “This is a major step toward a new kind of fetal therapy, one that doesn’t just repair but potentially helps heal and protect the developing spinal cord,” said Aijun Wang, co inventor of the placental-derived stem cell treatment technology and the study’s co-principal investigator [ . . . ].

The main goal of physical repair of the defect in utero is actually to reduce the incidence of hydrocephalus and hindbrain herniation, which are very common in people with Spina Bifida. The existing fetal surgery reduces the incidence of hydrocephalus from about 80% to about 40%. The improvement in leg and bowel/bladder function is actually a secondary benefit.

My understanding is that the hindbrain herniation (aka Chiari Malformation Type II) is the main cause of cognitive trouble in people with SB. But it's worth noting that it's very far from universal in causing that. Most people with SB are basically normal cognitively assuming they get good early intervention (VP shunt, PT, OT, etc.). Some early cognitive development can be slower as a knock on effect of not being able to move around as much as a baby and toddler, and thus less able to explore the environment, etc.

Source: I'm the parent of a toddler with spina bifida. She's completely on track cognitively and with fine motor skills so far. She's way behind with gross motor skills due to her inability to move her legs very much.

The good news is that the rest of the world will benefit from China’s treatment philosophy.

What's the plan in China for when one of these expedited treatments has a terrible side effect?

The FDA's slowness is about maintaining a low level of risk because the reputation cost of a really bad incident is huge.

There are people who do not want to have abortions. Either for religious reasons, because they themselves belong to a specific disability group (e.g. the blind and deaf) or because they tried hard already to get pregnant in the first place.

Especially for the latter, "make a new one" can mean a ticket reaching into the 6 figures, months of egg extractions, implantation attempts and spontaneous auto-abortions.

What a gross and idiotic take. “Just abort it”; i’m pro choice, but IMO life must be regarded as more sacred than what ‘ole tsss here considers. I can only conclude tsss has never dealt with any real loss in their life.