My daughter is seven now and was born with spina bifida and it’s been a long journey full of pain, but also joy. The first nine months she had breath holding any time she’d get upset (which for a baby is all the time) so she was simultaneously the healthiest and least healthy baby in the NICU.
She’s wheelchair bound, but intellectually very sharp. Getting her a spinal shunt a few weeks after birth helped alleviate spinal fluid pressure in her brain, although it elevates scenarios of “kid has an headache” to “maybe we need to go to the ER at 3am in the worst snowstorm of the season”, but she’s extremely sociable and a light to everyone that meets her.
I’m glad work is being done that can mitigate this and improve quality of life for these children. She keeps asking me when she’ll get her robot legs and we tell her they have to test it out on adults first to make sure it’s safe! Exciting times for people with physical disabilities.
I know what you mean about elevating otherwise normal kid illness. She had her first shunt failure in January. It was pretty stressful going from "hmm, she's fussy" to surgery within less than 24 hours. But she was back to her happy self with hours of the surgery too, which was a pretty stark indicator of how much the shunt is doing for her.
Hats off to everyone out there putting in the hours to make the lived experience of these folks much better than they would have otherwise been. If only we had more of you in the world.
Long ago, my next door neighbor's daughter had severe SB and was confined to a wheelchair, slow mental and emotion development, etc. Nobody thought she'd live, but in fact got to adulthood. It was basically a full-time job for her (single) mom.
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.
- What's possible for medical professionals to do for certain conditions, in large part due to the amazing levels of investment into research and implementation.
- How difficult it is for ordinary people to receive care. Primarily due to private insurance companies intentionally making it more difficult to get care.
Like the fact we're giving stem cell therapy to fetuses successfully is amazing, yet any time I go to a doctor's office or bloodwork company I hear an elderly person explain to the front desk person that they've been on the same insurance for decades and only recently started receiving bills they can't afford, or listening to the front desk person explain that now medicare no longer covers them for a routine thing.
Ideally, we could have both great research _and_ great general care in this country. I just don't know if I will ever see that day.
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.
Not really. There isn’t just one “residency”. ENT and dermatology residencies (to take just two examples) have more than enough US medical graduates to fill them. Residencies destined for primary care, internal medicine and family medicine would have unfilled positions if not offered to foreign medical graduates. The US grads don’t want these spots for reasons that are more complex than an HN comment, but can be read about elsewhere. It has little to do with the AMA for the last 40 years and little to do with training incentives or lack thereof.
I actually have a routine visit with a specialist at one of the top hospital systems in the country in 2 days, and I see in the portal I'm seeing a "CRNP, MSN", not a doctor.
I am in the process of trying to find a primary care provider, and I cant find anyone accepting new patients.
Bigger places you basically see the doctor for 2 minutes when you actually need one. I went to a ortho surgeon and they had a dozen patients “seeing them” at the same time. As he just went between rooms and nurses prepped everything.
edit if doctor scarcity were the issue then doctors would have a lot more leverage in salary negotiations than they do, which is to say they don't have much. because the hiring practices are limited by what they can bill, which they have no power over.
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.
Yes. I recently made a resolution to get established with all the medical professionals I don’t have set up. So a primary care, dermatologist, etc. over the past 2 months I’ve visited and had to go back a couple of times. I’ve literally overheard insurance-related issues in all cases. Whether it was the person in line before me or just overhearing people complaining while I’m in the waiting room.
Just last week I was waiting to get my blood drawn and the woman at the front desk, after continued prodding by an elderly man frustrated with lack of coverage, out loud said “Well, that’s insurance in America for you. Go ahead and call the number on the back of your insurance card because we can’t do anything for you.” Just deeply disheartening stuff to watch a late 80s man not realize after 15 minutes of being tossed between automated insurance phone responses that he simply won’t get the help he needs.
- 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.
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.
Our daughter was a particularly severe case too, and these interventions seem to have helped a lot. For the first four years she’d hold her breath every time she was upset, and need CPR, but we got her breathing again every time, so we don’t think there’s any brain damage. If we’d missed once, maybe I’d be telling a different story now. Thank goodness her head grew!
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 FDA's slowness is about maintaining a low level of risk because the reputation cost of a really bad incident is huge.
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.