What’s the most important tool of any science denialist? It’s the delete button, of course!
From anti-vaxxers to homebirth advocates, from creationists to climate deniers, advocates of pseudoscience sharply distinguish themselves from advocates of science by aggressively deleting any comments that question received wisdom and banning those who persist in inserting actual scientific evidence into a discussion. Deleting and banning is the quickest way to squander scientific credibility.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]The hill they chose to die on? Breastfeeding.[/pullquote]
Therefore, I was surprised to see March for Science squander its hard earned credibility to promote an ideology ahead of scientific evidence. The hill they chose to die on? Breastfeeding.
We have had some come to us about this post promoting an organization (Sci Moms) with a history of denying the well-established science on infant nutrition and criticizing health promotion initiatives of the World Health Organization and other health orgs.
We don’t dispute the science of this particular post, so we’re going to leave it up, but we want to encourage everyone to treat the SciMoms with some healthy skepticism and remind everyone that there are more reliable resources out there on infant nutrition, such as the World Health Organization, the American Academy of Pediatrics, and the Academy of Breastfeeding Medicine…
Someone came to them?
Denying the well-established science?
Criticizing health promotion initiatives?
Orwell couldn’t have done a better job.
This isn’t a science; it’s the logical fallacy “argument from authority.” But the worst part is the deleting and banning of anyone who tried to reason with the folks at March for Science.
Let’s take a look at what the LATEST scientific evidence about breastfeeding shows.
The most recent, most comprehensive review of the entire breastfeeding literature is Greenville, N. C. “Is the” breast is best” mantra an oversimplification?.” THE JOURNAL OF FAMILY PRACTICE 67.6 (2018). Here’s what the authors found:
The evidence for infant breastfeeding status and its association with health outcomes faces significant limitations; the great majority of those limitations tend to overestimate the benefits of breastfeeding. Nearly all evidence is based on observational studies, in which causality cannot be determined and self-selection bias, recall bias, and residual confounding limit the value or strength of the findings.
Moreover, breastfeeding has risks as well as benefits:
…[E]xclusive breastfeeding at discharge from the hospital is likely the single greatest risk factor for hospital readmission in newborns. Term infants who are exclusively breastfed are more likely to be hospitalized compared to formula-fed or mixed-fed infants, due to hyperbilirubinemia, dehydration, hyper- natremia, and weight loss (number needed to harm (NNH)=71). For weight loss >10% of birth weight with or without hospitalization, the NNH for breastfed infants is 13.
That translates to tens of thousands of preventable hospital readmissions each year.
According to Sarin, Arjun, Andrew Thill, and Clay W. Yaklin. “Neonatal Hypernatremic Dehydration.” Pediatric annals 48.5 (2019): e197-e200:
Dehydration/excessive weight loss is defined as a loss of more than 10% of birth weight prior to the end of the first week of life, and is thought to occur in up to 15% of exclusively breast-fed infants.
And the consequences are devastating:
Serum sodium level greater than 160 mEq/L is a risk factor for morbidity and mortality. The most commonly cited complications include seizures, bradycardia, vascular thrombosis, disseminated intravascular coagulation, renal failure, intracranial hemorrhage, pontine myelinosis, cerebral edema, and death. Seizure is the most common complication and usually occurs during correction of the hypernatremia, as do the other common complications.
Aggressive, unreflective breastfeeding promotion (like the breastfeeding promotion by the March for Science) has been responsible, particularly the poorly named Baby Friendly Hospital Initiative:
Flaherman, Valerie, and Isabelle Von Kohorn. “Interventions intended to support breastfeeding: Updated assessment of benefits and harms.” Jama 316.16 (2016): 1685-1687.
The BFHI bans pacifiers in contradiction to the scientific evidence.
Counseling to avoid the use of pacifiers in the newborn period is an intervention commonly used to support breastfeeding. However, evidence has been building that infant use of a pacifier may be associated with a reduced risk of sudden infant death syndrome,7 the most common cause of postneonatal death in the United States. The evidence review showed that avoiding pacifiers was not associated with any breastfeeding outcomes assessed in the evidence review. A recent Cochrane systematic review reached the same conclusion. Thus, routine counseling to avoid pacifiers may very well be ethically problematic.
The BFHI bans formula supplementation in contradiction to the scientific evidence.
Counseling mothers to avoid giving infants any food or drink other than breast milk during the newborn period is step 6 of the BFHI and one of the primary care interventions most commonly used to support breastfeeding. Three randomized trials have specifically examined the effectiveness of counseling to avoid giving newborns any food or drink other than breast milk; none showed a beneficial effect of such counseling on breastfeeding duration.
Aggressive breastfeeding promotion HARMS babies:
Other harms were noted in the 2016 paper Unintended Consequences of Current Breastfeeding Initiatives:
Enforced prolonged skin to skin contact leads to deaths from Sudden Unexpected Postneonatal Collapse (SUPC).
Reports of SUPC include both severe apparent life-threatening events (recently referred to as brief resolved unexplained events) and sudden unexpected death in infancy occurring within the first postnatal week of life. A comprehensive review of this issue identified 400 case reports in the literature, mostly occurring during skin-to-skin care, with one-third of the events occurring in the first 2 hours after birth …
Infant injuries and deaths as a result of enforced 24 hours rooming in and closing well baby nurseries.
An overly rigid insistence on these steps in order to comply with Baby-Friendly Hospital Initiative criteria may inadvertently result in a potentially exhausted or sedated postpartum mother being persuaded to feed her infant while she is in bed overnight … This may result in prone positioning and co-sleeping on a soft warm surface in direct contradiction to the Safe Sleep Recommendations of the National Institutes of Health. In addition, co-sleeping also poses a risk for a newborn falling out of the mother’s bed in the hospital, which can have serious consequences.
So the benefits of breastfeeding have been massively exaggerated and the risks ignored. That’s precisely what feeding safety advocates have been saying for years. It is deeply unfortunate that the March for Science chose to elevate ideology over science, and ideological conformity over scientific debate.
They would do well to keep the following aphorism in mind.
Science:
If you don’t make mistakes, you’re doing it wrong.
If you don’t correct those mistakes, you’re doing it really wrong.
If you can’t accept that you’re mistaken, you’re not doing it at all.
I propose that we add the following line just for March for Science:
If you delete and ban those who question you and hide the evidence that you were mistaken, you have spectacularly destroyed your credibility.
OT: For those that don’t know me in real life or FB.
This week has been intense. Last Friday we were in LA and YK had a pain crisis. I took him to the ER at Children’s Hospital Los Angeles, thinking they’d give him some IV toradol, maybe some pain killers, let him rest, and send him home. I was going to ask for a referral to their orthos because I was frustrated with his regular team and wanted a second opinion. I figured we could stay with my MIL in the area (which is basically why we go to the area on a regular basis), and help with her caregiving needs if they could get him in STAT. The kid is in an online school, so being out of town isn’t a big deal.
Well, that is not what happened. He was surrounded by medical personnel before we could even get all the way into the lobby. He was in really bad shape. They admitted him. They attempted to get pain under control and figure out what was going on. I did get my second opinion, but in rather dramatic fashion. I also came to trust his regular care team again as I came to understand why different decisions were made and when. By Sunday we were hoping to get his pain controlled enough to send him home to see his regular surgeons ASAP. They couldn’t. They wound up air lifting him back to our home hospital on Monday. He had surgery on his hip last night to correct the source of the extreme pain. They’re anticipating a Sunday discharge as long as pain is under control.
Best wishes for healing and easy recovery. I’m glad he got good care. Don’t forget to take care of yourself in all this.
WHOA. I hope you are all doing OK. Thank heavens they figured out what the cause was…
Sounds awful, poor boy. Did he get an osteoma growth in a sensitive spot? Hopefully whatever it was is settling and his pain is manageable and you all get back home soon.
This lovely little thing. And the xray doesn’t really show the extent of it. There were also a bunch of smaller ones contributing to the pain.
https://uploads.disquscdn.com/images/c031ea79dd77ed61167a9eabb27ce0de16444b0f8aa88e0b84517ded601c5b92.jpg
That looks like a knife blade-poor kid. I hope they got it all out and it’s not at risk of growing back.
These things can, unfortunately, grow back, but since he has reached skeletal maturity the risk is low.
But this is this particular kid who is “medically interesting”. They have this whole presentation on the four procedures over six years it took to fix his right wrist that they give to every new crop of students and residents. Several of his other procedures show up in teaching lectures regularly. Thursday they worked him in after regular hours and every single resident wanted to be in that OR. And then right before surgery his hip:leg surgeon asked me if I wouldn’t mind inviting his hand/arm surgeon to “come play”. Of course I didn’t mind. So they took him back and as MrC and I were walking outside we see th hand/arm guy sprinting across campus towards the OR. Guess he really wanted to play. But that’s good because having two first class surgeons made the whole thing take about 45 minutes less than anticipated. I suppose if you’re going to have a painful rare disease it’s good to be interesting, because he gets all these amazing surgeons chomping at the bit to take care of him.
Hugs to both of you. I hope they have his pain under control.
Today’s goal is all oral pain meds and ambulating at least between his bed and bathroom with the help of a walker. If he does okay he can go home tomorrow.
He sounds like the sort of patient who is brought in for medical student ‘long cases’ for their final exams-medical schools are always on the look out for volunteers to be examination subjects (if he thinks he wouldn’t mind being examined by a bunch of students!)
He is. Both of my affected boys get visits by med students and residents from time to time, but this one gets even more because he’s a unique case. The oldest has a more typical case, so he gets visits that are more along the lines of “this is a relatively rare condition and you may never see it again, but this is what it looks like just in case.”
Dem does sometimes, too. Not that glaucoma is especially rare, but apparently his eyes are tricky to examine. (Congenital glaucoma is a good bit rarer than the other types, of course, but not as rare as your boys’ issue.)
Hugs again for YK. Can he have a bite of birthday cake?
The Ronald McDonald House has given us a cake and a “small” gift. Small is in scare quotes because it’s a 1600 piece LEGO set. This is not my definition of small. The other kids and adult kids are all going to try to stop by around lunch to have cake and presents. Several of my friends have sent balloon bouquets and the nurses helped me decorate his room a little. We’re trying to make it as fun as possible.
I saw those balloons on FB; his bed may start to float, lol
There’s more coming…
And I think we’re going to have to make a second trip home just for balloons.
What an awful situation. Hope things improve for you and yours soon.
Replying to myself to update:
He came home Sunday afternoon. He’s doing very well.
The way I’m reading it, people complained about the rep of the organization, and these guys replied with “all their other work aside, THIS article we agree with.” I’m not sure they even looked into what the denial-ism that was accused even was! They just got a bunch of complaints, assumed that they were true and were like, “Sorry we quoted someone who screwed up in other things, but we’re keeping this article because this particular one is accurate.”
I’m not sure if that’s better or worse than knowingly pitching in with lactivists…
It’s laughable that the March for Science considers the Sci Mom article to be so controversial that they have to put up a warning (although they won’t delete it, generous them.) The Sci Mom article was about as measured and bland as it gets.
(May I also say that I notice how often writers crib from Dr. Tuteur while crediting her minimally or not at all? The formula seems to be taking all her arguments and stats, repackaging them with perhaps a different tone, and then signing their own name to the piece. I mean I am glad the info in getting spread far and wide, but really…)
Apologies for the Daily Mail link:
https://www.dailymail.co.uk/news/article-7063219/Swedish-couple-raised-baby-VEGAN-jailed-nearly-starved-death.html
18 month old infant nearly dies of starvation whilst on a diet of breast milk, brown rice and potatoes. So breast milk is the perfect food for babies and has everything they need? Aye, right.
There’s unfortunately another nomadic couple who only eat fruit and plan to feed their baby only fruit and breast milk. The mother appears underweight and plans to nurse until the child is six. I have my doubts the baby is getting anywhere near enough breast milk considering the mother’s age, weight and ultra-restrictive diet. But the baby has also never seen a pediatrician or been weighed AFAIK. Fuck these people who would sacrifice their child for their. . .beliefs? I have a hard time believing they really believe the things they claim.
In the UK, children don’t ‘belong’ to their parents, so if parents make a decision that isn’t in the child’s best interests, then the child can be made a ward of court and protected, taken into care etc. We’ve had cases where parents decided to try faith healing instead of insulin for diabetes for their child, or parents refusing clinically necessary chemotherapy. It gives us the odd very controversial case like Charlie Gard and Alfie Evans where a lot of commentators (usually from USA) screamed about ignoring parental rights and stealing their children, but in law here, parental rights are limited a little which means that if we have parents insisting on a highly restricted diet or have bizarre health beliefs, their children’s health and life isn’t at risk.
That is a good law it protects children. There have been children here who have died from faith healing and it was almost always preventable. We need a law like that in the US so children can escape from faith healing or even the occasional vegan diet death.
With poor little Alfie Evans in Alder Hey-the best childrens hospital in the country, up there with Great Ormond Street-there were all sorts of accusations about the doctors playing god, deciding who lived and who died, people claiming the decision had been made because they’d spent too much money on him so they were putting him down, and they let him starve to death because they didn’t want to spend any money on food or fluids for him. I even read one totally deluded discussion claiming that he had been part of a secret research experiment and that had come to an end so there was no point keeping him alive any more (the ‘proof’ being all the blood tests the poor child had regularly). Cost of treatment was never a part of the issue with him-he’d been in ICU for well over a year, that would have cost at least £1.5 million, so spending a few more pennies on intravenous fluids was nothing. I got the impression that most of the more virulent comments were from USA based people-they didn’t accept that just because you are a parent to a child, you don’t have total control over that child and that your decisions can be over ruled if they aren’t in the child’s best interests. People didn’t like the idea that the ‘state’ could interfere with your parenting.
But UK law is very clear when it comes to capacity and consent. In the childrens act, the concept of parental responsibility is laid out, but parental rights over their child aren’t absolute. If you can’t consent for yourself because you’re too young to understand, then it is a medical decision whether the proposed treatment goes ahead. Doctors will take into account what the next of kin want and what they think the person would want for themselves, but doctors aren’t bound by that. Obviously, its best if everyone agrees, and that’s what usually happens, but if there is a strong difference of opinion then it ends up in court where a judge could override parental responsibility if he rules that way.
It’s not necessarily a given that the judge will side with the medics-we had a case here of a tiny premie Charlotte Wyatt who was severely brain damaged and was in NICU ventilated and fitting. She had multiple problems and kept arresting and the doctors suggested that palliative care would be better as she had no quality of life and was in pain constantly. The parents disagreed, and the court ruled with the family that she had to carry on being resuscitated. She’s now in foster care, her parents separated and no longer in contact with her, and she’s blind, deaf, paraplegic and totally dependent for everything.
Over the years there have been a few similar cases: Mahadi Bacheikh, Amber Hartland, Luke Winston-Jones. All of them with progressive, incurable, severe developmental and neurological issues which left them all ventilator dependent with no hope of improvement.
It’s not an ideal system by any means-we still get cases where parents or carers harm their child through their choices but manage to keep it hidden, but at least we have a robust system to deal with cases that are exposed.
Did they not want to raise a disabled child or was she taken from them and put into foster care?
She was born prematurely (and the pregnancy had also been complicated by poor fetal growth and IUGR), and so she spent her first three years in hospital being ventilated. She had massive brain damage, lung damage and renal failure. Her parents separated and divorced during that time, and neither of them was prepared to take her home-they had three other children. They had been trained up to deal with her feeding tube and airway protection etc, but eventually they just stopped visiting her in hospital. The last time her mother was interviewed, she said she’d only visited 3 times in the last 9 months she was in hospital because it was too difficult, and hadn’t seen her for years since. When Charlotte was 3, she was fostered out to foster parents-apparently she still needs supplemental oxygen but is able to swallow and can get about a bit with a walking frame and support.
So she wasn’t exactly taken from them, they gave her up voluntarily.
That is really cruel. I am still changing my daughters diapers after 15 years and she has to be supervised 24/7. It is tough at times but I could never just abandon her.
That whole thing was a fucking circus. There were desperately ill children and their families disturbed because of people outside who should really have had water cannon used on them. I know someone who attended a protest in a city centre instead: that, I can respect. I don’t agree with her view but at least she was expressing it without getting in the way of a single patient, relative or member of staff at a hospital for desperately sick children.
The playing God stuff in this case was full on moron though. As if it isn’t playing God to keep a person alive on ventilators etc. I loved it when the hospital wouldn’t let that gross American wingnut pastor come and get in the way in the ward.
It was truly appalling: I think eventually the dad realized that they were ruining the public appearance of the whole case (it doesn’t come across well in the media if you’re trying to get the support of the public in fighting for your child’s life, as they saw it, when their supporters were sending death threats to hospital staff, mobbing anyone who tried to enter the hospital, trying to rush the front door and overturn the police guard, and encouraging drivers to honk their horns continuously outside the hospital) so eventually he asked people to calm down.
I think up until the last few weeks, the parents were on board with his treatment, but the dad was contacted by a religious pressure group (Christian Legal Centre) and it was then that the demands to let him go to Italy started. The hospital in Italy was just an ordinary hospital, nothing like as specialized as Alder Hey, and all the clinicians were offering was a further 2 weeks being ventilated while they repeated all the tests he had already had done multiple times. The clinicians from the bambino hospital had already examined him and seen all his results, and they said clearly there was nothing that could be done, but they’d be prepared to ventilate for longer. But the way it was spun was obviously Alder Hey are pulling the plug and trying to cover up their own incompetence by refusing to let him go to another hospital.
It would have been awful for the staff-they’d been looking after him for 18 months, they would have developed a relationship with the family, and then along comes some fundamentalist so-called Christians who destroy everyone’s trust in the hospital and it meant that the parents, instead of spending their last few days with him, ended up spending them fighting in court.
I thought the Pope was well out of order too-he might be God’s vicar on earth or whatever, but he’s not a doctor, he knew nothing about the case and he shouldn’t have made inflammatory public statements about what the court should allow. He should have kept public statements to expressions of sympathy.
In some ways, I think the US commentators rationale is more sad than that. No one likes the idea of a child having a catastrophic, degenerative illness – so a sub-group of Americans hold up “parental rights” as a magic bullet that prevents child death.
Charlie Gard was dying in bits and pieces during the same time that Spawn was in the NICU and at home on oxygen. The people I know who were most in favor of Charlie Gard’s parents’ rights were the least able to listen to my stories about bursting into tears when Spawn was 4 months old and an resident told me that Spawn’s throat looked good with only the level of irritation that he’d expect from having an NG tube in place. Or the fact that Spawn jerked from pain whenever they suctioned him while he was on the ventilator. Or the fact that the burn calluses on his toes from his pulse oximeter took about a year to wear off. (Clearly, my experience with Spawn was totes different from Charlie Gard’s life because….um…..Gard wasn’t a preemie? Also, England. Mainly because this is scary shit and I prefer to be angry over scared).
US parental righters tend to believe that the medical procedures needed to keep a vegetative person alive are totally painless – and they refuse to hear otherwise. They have no actual interest in being involved in hospice or palliative care or even working with people with serious disabilities – because that forces them to face the reality of suffering and death and that suffering and death happen to children.
Plus, the media doesn’t help. We like a good story – so we ignore some of the obvious things. For example, Gard always had blankets and stuffed animals arranged in pictures to cover all of the wires, tubes, immoblizers (although, he probably needed fewer than most kids), and bruised/mottled areas. Plus, he’s not asleep – or shouldn’t be asleep – after all, he was a baby who was more than old enough to be moving about – but he’s in a coma.
Yes, the pictures the family released of Alfie Evans were obviously posed. The one that got used the most was him in his mother’s arms and his arm is around her shoulders-they were using that to say that he was aware of certain things and could hug his mum, except it’s obvious his dad’s hand is holding Alfie’s arm in position.
I absolutely don’t blame the dad for doing what he did-he was desperate, angry, grieving, he would have jumped at anything or anyone that promised to save his son. Unfortunately, he was taken in by religious pressure groups who used his desperation for their own agenda and poisoned him against the medical and nursing staff who had been their biggest support until then.
Well, they are in a little bitty echo chamber, and they don’t peek out unless forced to, so…
These people have become so used to babies surviving due to modern medicine that they forget why things like infant formula were invented.
These parents don’t sound like the type that is amenable to reason exactly. No weights, no registration of baby at birth, no medical care, no prenatal care, “we don’t need no stinking system,” and they almost killed this baby. The article indicated she could go back with them with follow-up, but it strikes me that the parents would be more likely to move away than to comply with conditions.