One of the greatest of the many ironies of homebirth advocacy is the way that homebirth advocates have become exactly what they claim to despise.
The same people who tout The Business of Being Born apparently don’t notice the business of being born at home, involving a small army of service providers who charge hundreds or thousands of dollars (placenta encapsulation specialist, anyone?). The same people who write books about putting childbirth ahead of the corporate bottom line, charge money for those books, money that is being used to improve the bottom line of the corporation that published the book and the author who wrote it.
But perhaps the biggest irony of all is the way that homebirth advocates use fear to manipulate women. I’ve written before about the central role that promoting fear of doctors plays in natural childbirth and homebirth advocacy.
The message, integral to natural childbirth advocacy is clear: Obstetricians can’t help women because their technology is useless (except in the rarest of circumstances). Obstetricians don’t want to help women; they want to make money, show off, and get to their golf games as quickly as possible. In fact, obstetricians actually want to HURT women by imposing their fancy technologies to ruin otherwise perfect labors simply so that they can apply even more technology. And (this is the big finish), the only way you can prevent obstetricians from victimizing you, hurting you and profiting from you is … to buy our NCB products!
The ultimate expression of fear mongering is the way that natural childbirth and homebirth advocates play the autistic baby card.
That’s right; the same people who wail and gnash their teeth over obstetricians “playing the dead baby card” copy them faithfully with only one exception. Despite the derision of natural childbirth and homebirth advocates, a dead baby is real possibility in every pregnancy. In contrast, autism due to vaccination, ultrasound, pitocin, etc. is merely a figment of their imaginations.
Google the phrase “dead baby card” and you get more than 25,000 results, almost all of which are natural childbirth and homebirth websites. And what is the “dead baby card”? It’s the NCB and homebirth advocates’ sneering dismissal of interventions that reduce the risk of perinatal death. When an obstetrician tells a woman that breech increases the risk of death during vaginal delivery, advocates insist that the doctor is playing the “dead baby card” and proceed to offer anecdotes of women whose babies were fine after being delivered vaginally from the breech position. When obstetricians warn women about the risk of neonatal death from Group B strep sepsis, advocates offer advice to skip the test, stick garlic into your vagina, and, of course, anecdotes about women who tested positive for GBS and whose babies didn’t die of sepsis. And when obstetricians point out that prolonged labor is a risk factor for poor outcomes, advocates whip out stories about women who pushed for 9 hours and whose baby survived the experience.
Yet these same advocates have absolutely no problem expounding the most fanciful theories about interventions in childbirth. Australian midwife Hannah Dahlen is currently flogging the absurd claim that C-sections alter infant DNA. Killer “midwife” Gloria Lemay routinely ejaculates claims that pitocin causes autism. Wootastic journalist Jennifer Margulis is currently peddling her hope claim that prenatal ultrasound causes autism. A post on a chiropractic website hits all the high points, insinuating an autism connection with ultrasound, mercury in pregnancy, Rhogam, flu shots, dental fillings, induction, epidural, restricted maternal position, forceps, vacuum, C-sections, and umbilical cord clamping.
Is there any evidence for these claims? No, there’s none, zip, zero, nada, but that doesn’t stop natural childbirth and homebirth advocates from wielding the “autistic baby card.”
The ultimate irony is that natural childbirth and homebirth advocates have become everything they claim to despise. They make millions of dollars peddling “natural” goods and services (Hyno-babies, anyone?). They create and fund lobbying groups whose only purpose is to increase the income potential of homebirth midwives. They engage in fear mongering of the worst kind promoting fears of doctors, hospital, and childbirth interventions (except those that can be done by homebirth midwives).Perhaps most despicable of all, they routinely play the completely fabricated “autistic baby card” and utterly fail to see the irony.
Anybody notice these people are the first ones to scream “sheeple” at anybody who disagrees with them, yet they BLINDLY follow everything touted as “natural?”
Too true. But strangely, I have noticed that most people using the word “sheeple” in seriousness have some idiology they blindly adhear to. I do particularly enjoy the strange belief that everything natural is good, as there are so many counter-examples that it’s funny.
There’s this road side weed that will have white, umbrella shaped panicles of blossoms in May, and a purple spotted stem. It’s related to many edible plants and herbs – parsley, dill, fennel, carrot. 100% natural, and quite toxic.
Baby cards are suitable for any type of occasion that you have. Even those children who have disabilities can be considered. Thanks a lot for sharing this information.
NCB alternates between playing the Autism Card and the Ruins Bonding Card.
Rampant speculation here, since the cause of autism is (mostly) unknown, but…hypoxia at birth is known to cause various problems, including a lot of neurological problems. Maybe subclinical hypoxia during birth (i.e. prolonged pushing with variable decels) might increase the risk of some mild global dysfunction. For example, autism. Who’s to say that vaginal birth isn’t a risk factor?
I have wondered that, too.
I am quite confused on this one. I used to participate in a forum for children with PVL/cerebral palsy who would also be given a separate diagnosis of autism. Were these children doubly unfortunate to have two rare conditions, or should autism be a diagnosis of exclusion? Certainly, a diagnosis of autism can circumvent awkward and potentially expensive questions about events around birth which aren’t too popular with anyone. In the end, labels are less important than the individual child, but it doesn’t always work that way, as people get pigeon holed.
The idea of a “cure” for either seems a bit unlikely – though behavioural things can of course be improved. Isolating the cause might be a bit more helpful.
Autism is NOT an exclusive diagnosis. Nothing like it. There are plenty of comorbid conditions associated with autism which are NOT autism.
There’s a constant (and sometimes deliberate) confusion about that.
GI problems
food allergies
food intolerance
seizure disorders
autoimmune disorders
mitochondrial diseases
Those are some that I can think of that I’ve seen people call “autism”, but which are separate disorders.
Ideally, no condition would be a diagnosis of exclusion. Exclusionary diagnoses are generally an acknowledgment that our current understanding is limited. I would hope that something as (supposedly) common as autism would not fall within that category, especially given the stigma it currently has.
Sara Snyder, Bambi Chapman and I will be discussing Hurt by Homebirth on HuffPo Live starting between 7:15- 7:30 PM EST tonight.
http://live.huffingtonpost.com/r/segment/home-birth-statistics%2C-fetal-deaths-%26-injuries/51479633fe344411590004ba
is there a video link?
Found it on the link. Wow!! great job!
OT: more beautiful and agonizing posts here. I though of her with the whole Rowan debacle. http://dreamsyoudaredream.blogspot.com/
Having a baby is not a game of cards to be played by those providing care. Rather, women deserve informed consent – they deserve to know what their options are and what the relative risks of those options are, and they deserve to know that their choice (after being provided with the needed information) will be respected. I don’t believe any real health care provider ever “plays a card” in the care of a patient – health care simply is not a game to them…but I do believe many purveyors of home birth “play cards” with their clients.
My OBs did not talk to me about options or the relative risks. They had their practice guidelines and would not deviate from them, so for them there was no point in discussing with me what risks were involved with alternative options. While I’m no anti-MD crusader, they could do a lot more to include patients in the decision-making processes. That said, if I were them, I would behave the same way. Why invite patients to substitute their own judgement for yours?
Because it’s what patient autonomy requires.
True, but only if the provider is prepared to work in the way that the patient requires. In my view, a provider should only provide options that they consider acceptable, and offer to refer-on if the patient requests something the provider considers inappropriate or unethical.
and also things that you aren’t facile at or don’t do enough volume of to consider yourself competent.
At some point, you have to say no.
No, you can’t have sleeping pills.
No, you can’t have an eighth rhinoplasty.
When you say no to patients, you’re not being mean, or going on a power trip, more often than not you’re trying to do the right thing.
When you can’t, or won’t, say no to your patient, you end up like Michael Jackson’s doctors. Not just the one who eventually killed him, but all the others who went before, acquiescing to obviously inappropriate requests for surgery and medication.
Then a provider should if possible give a referral to another provider.
There are limits tho…for example if a patient wants a twin homebirth or a breech homebirth there is no obligation to refer under the principle of nonmalificence – especially where the procedure being requested would be considered risky by the majority of mainstream practitioners. In addition, I believe that to do something like that would open the referrer up to liability.
There are clear incidences where one should refer even if one personally believes the action would be harmful (like practicing catholic physicians referring patients for abortion for example).
We have had certain patients who have sought surgeries of one kind or another where clearly they are very poor candidates due to health issues and they have been unable, even with two or three opinions, to find a surgeon willing to operate on them. I don’t think that is malpractice and I fully agree with Sue that the provider is not required to offer options that they feel will be harmful even IF the patient is aware of the risks.
I had a situation where someone with bad gastroesophageal reflux, coming for an elective operation, didn’t want to be intubated. I refused to do the case using a supra-glottic airway and it wasn’t ammenable to regional. I told the patient they could decide to cancel the operation or they could be intubated. Those were the only two safe options in my professional opinion. Would you argue that because the risk of aspiration was likely 1/100 and the risk of pneumonitis, respiratory failure and death was much less than that, that I should have informed the patient of the risks and done what they asked?
I guarantee I would have found no expert witness support for that had there been a law suit. Maybe that seems like “defensive” medicine and maybe it is, but the standard of care is what a reasonable physician with training equivalent to yours would consider prudent in that situation. Given that we are contracted by the patient to provide care and assume risk, I do not think we should be compelled to do whatever the patient desires “as long as informed consent is met.”
Medicine is NOT a service industry.
Hmmmm. An interesting point. “Unsafe” referrals. So lets say I refer someone with a breech baby for an out of hospital ECV with another midwife and the client abrupts during the ECV. Would I be liable as a primary caregiver for not referring her to a hospital ECV done by an OB?
If you are a professional held to professional standards, I would say the answer is yes (as in, if I were on the jury in a civil suit, and the argument was made that you held some responsibility for the outcome, I would agree with that; you know that a HB under those circumstances is well outside of standard of care, so you let someone else do it)
If you are a midwife playing the baby game, then you aren’t liable for anything.
Are there CNMs who do out-of-hospital versions? Why would you take that risk?!
Absolutely. Maybe the “informed” part included informing the patient that, in your professional opinion, any provider who agrees to do what they are asking is guilty of malpractice, because the standard of care clearly indicates to not do it?
“I don’t know anyone who would do it, and I wouldn’t trust any one who would. That’s my referral.”
It doesn’t have to be all or nothing. Of course you can only offer what is possible given all the legal, ethical, and practical considerations that are involved, but that doesn’t mean you get rid of the concept all together. If you personally can’t or won’t provide one of the options that should be available to the patient, I do think you still have an obligation to tell her that those options are available elsewhere. Informed consent and patient involvement in decision-making should be a part of the standard of care.
How far into the fringe do you go when you inform a patient what options are available? Should you specifically address fringe concerns such as ultrasound causing damage if the patient doesn’t bring it up? This could become quite a lengthy conversation. I’m not arguing with you or saying you’re wrong, Not at all. just trying to understand the boundaries. (Aside: I’m glad I’m not a medical ethicist. Some of those decisions are so painful.)
I go far into the fringe. And add that everything is a choice but since I like EBM and have respect for community standards, I will not be the best provider for your planned twin homebirth (or whatever). Let me ask if clinic X will take you on as a patient. Of course in a more urgent situation you have to call for help and do your best…
no. The standard for informed consent is to present complications and adverse events that are severe (like death or permanent disability) even if they are rare,and then the ones that are common. There is no precedent for having to disclose risks that are clearly speculative.
I agree with you in theory. True informed consent is the ideal. But real life falls so far from the ideal. Many of my patients can’t participate in full informed consent for one reason or another. Some of my patients don’t have the cognitive ability. For instance a significant proportion of my patients can not understand percentages at all. Statistics mean nothing to them when conveyed in a verbal form and still don’t mean much even when expressed in a picture form. Many of my patients don’t understand the concepts of cause and effect, and don’t know what coincidence means. Other of my patients have trouble with informed consent due to emotional or mental health reasons. For instance some will make terrible decisions based on a simple needle phobia.
When there are these barriers (and many others), how much should I respect their choices? I am not a paternalistic person by nature, but my job requires paternalism much more than I had anticipated before becoming a doctor. I struggle, as I’m sure most doctors do, to find the right balance.
I suspect that some deep part of our nature likes to be given simple directed advice. It’s not fashionable to accept paternalism, so we reject mainstream advice and run into the arms of the woo-mongers instead. They offer “certainty” and simple directed advice with a nice smile and a harmless “remedy” to go with it.
I don’t know why simple, directed advice from a health care professional is so maligned. we hire professionals in order to get their advice and, gas, do what they suggest.
C/S alters one’s DNA? They never told me that in med school. How’s it even possible?
C-Section doesn’t alter DNA. But some claim it alters epigenetic tagging. That people making this claim often don’t understand this distinction just betrays their ignorance of fundamental biology.
I’m going to indulge myself in some reading tonight…my most recent hypomanic phase was about researching homeopathy and flower remedies; brain went numb and eyeballs were sore from rolling. It’s been a while, ready for a new helping of something deliciously stoopid.
LOL, CSM. I’ve spent way too much time reading about homeopathy and Bach flowers – it gets less feasible the more you read! (Tip to other readers: “Back flower remedies” don’t actually contain any of the flower – they are the fluid collected from dew drops on flower petals. Yes, I’m serious!)
Due drops on flower petals…so poetic. There needs to be a cute kitten remedy of sorts.
Epigenetics is one of the current fashions in woo-land. If there’s no evidence that something effects genetics, well, it must be epigenetics.
Epigenetics itself is not woo…and it’s not “new” either, which is what Hannah Dahlen’s asserts in the NZ Herald, in the link that someone posted in this thread. There are solid scientific papers that show a specific organism responding to a specific environmental condition by making changes to the regulation of certain of its genes, and in some cases this change in regulation can be heritable. Dahlen provides no evidence that C-section itself is an environmental condition that human beings respond to by making changes in the regulation of any specific genes. Her article is simpy a summary of the paper she published speculating about the possibility. We can just as easily hypothesize that attachment parenting is an environmental condition that human beings respond to by up-regulating genes that result in autistic behavior. I sincerely hope that the reputation of the valid and important field of epigenetics is not tainted by this sort of pseudo-scientific nonsense.
Epigenetics itself is not woo.
Neither is quantum mechanics, but QM has gotten a whole lot of woo attached to it and, unfortunately, epigenetics appears to be having the same thing happen to it.
Similarly, the laws of thermodynamics are not woo, but creationists run around misusing them as well.
Yeah, I’ve had that argument before. “But the second law says…” Hey, the Earth is not a closed system. The second law does not apply.
Of course the 2nd law applies to open systems. It applies to everything.
Then again, what the 2nd law _requires_ is very dependent on the type of system. In particular, “Entropy cannot decrease” is only a consequence of the 2nd law under specific conditions. However, that is only a very limited statement of the 2nd law. One of the most functional statements of the second law is, “It is not possible to create a process in which the sole result is the addition of heat and its complete conversion to work.” From that, you can formulate the Clausius inequality, which you can than apply to whatever type of system you want. Indeed, if you have a closed or adiabatic system, the Clausius inequality requires that entropy must increase overall. However, in other types of systems, other consequences apply. For example, in open systems at constant pressure and temperature, it is easy to show that the free energy must decrease for a spontaneous process, which can happen with decreasing or increasing entropy (see snowflake formation for a spontaneous process with a decrease in entropy)
Don’t feel bad if you don’t know all this. On one hand, it’s pretty fundamental thermo. OTOH, it’s a pretty advanced concept. On the third hand, as long as you don’t run around making bold pronouncements about what thermodynamics requires, it’s not a problem to not know it. On the 4th hand, creationists don’t know this stuff either, but it doesn’t stop them from blowing smoke about what the 2nd law requires.
I can pretty much kill every discussion about the 2nd law by asking, “Can you show how that violates the Clausius inequality?” If you don’t know why I am asking it, then you don’t know enough about thermodynamics to have a meaningful discussion of it.
Yeah…
I’m going to go out on a limb and say that there are no NCB blogs where a throwaway remark in the comments turns into a discussion about the laws of thermodynamics, and an erudite one at that.
Evidently the smart people are hanging out here, while the folks at MDC are finding new cartoons of boobs to add to their signatures.
Educate yourselves mamas…no, seriously, learn new stuff.
OK, if you want to get all technical about it, the second law doesn’t apply ** in the way they say it does, ** given that the Earth is an open system. 🙂 Thermo wasn’t my best subject in undergrad. I’ll admit that. I think thermo was one of my two C’s in physics classes. I understood entrophy but never quite grasped enthalpy or Gibbs free energy. Statistical mechanics was awesome, but thermo was just a little bit ouf of my reach.
I do like this formulation of the three laws: 1) You can’t win. 2) You can’t break even. 3) You can’t quit the game.
Epigenetics is difficult to understand, even for the people who study it. The definition has gradually grown to include an array of molecular mechanisms of “extra”-genetic inheritance, ie, not proximately the result of the sequence of nucleotides, some of which have little to do with one another. If you go to a seminar that involves epigenetics, the researcher typically clarifies at the outset what they mean by that term. People who study one area of epigenetics can’t necessarily grasp what other researchers in a different area are doing. The idea that a practicing midwife or doctor can just jump into the field and start offering worthwhile research is basically absurd. It’s even more absurd to suggest that any but a small handful of science journalists could write meaningfully and informatively on the topic.
Some of the earliest evidence for epigenetics in humans comes from longitudinal cohort studies, and the evidence is strong, but geneticists have been studying epigenetics for years. Techniques that allow us to pinpoint the mechanism are partly responsible for fueling this massive increase in interest.
Now that humans are involved, epigenetics has become the bugaboo of people who either 1) don’t want to accept that a trait has a strong genetic basis, which would imply that there is no one to “blame” and most importantly, no way to prevent potential disaster, or 2) don’t understand genetics at all. For example, the implication by the neurologist that increased sibling risk is the only evidence that autism has a genetic basis. Absolute baloney.
One of the things that absolutely fascinates me about plants is they have an abundant array of genetic material to work with. It’s like a toolbox, but the mechanisms to activate the various tools is beyond my understanding.
I think epigenetics may be one of the methods that plants activate and deactivate genes as needed.
So far, what I have read in these forums, no-one here is arguing that epigenetics itself is woo. Just the specific applications of it. Just like with the word “quantum.” No-one would suggest quantum physics is woo, but the word is certainly misused.
“There are solid scientific papers that show a specific organism responding to a specific environmental condition by making changes to the regulation of certain of its genes, and in some cases this change in regulation can be heritable.” – so an example would be, say, my Siamese kitty whose cooler body areas express a pigmentation gene to a higher degree?
If I remember correctly, the siamese cat pigmentation gene encodes a protein that is temperature sensitive (ie, in this case, inactivated at higher temperatures), so it would not be a good example of an epigenetic change. Let me get you a few good examples of the “solid scientific papers” I’m referring to.
Awesome, thanks!
Here are a few papers; they are by no means comprehensive or even the best examples available, but they are at least an introduction to some of the ways epigenetics works. Like DiomedesV noted, the term epigenetics can mean differant things to differant people, even if they work in the field (which I don’t). Others here may have better suggestions of papers for you.
This is a review of epigentic alterations in plants, and it gives examples of induced changes that either effect only the plant that is exposed to an environmental condition, or its offspring as well:
http://www.ncbi.nlm.nih.gov/pubmed/22976389
This study in mice shows changes in hepatic gene expression among the offspring of males fed a low protein diet vs a control diet; I only read the abstract for this one:
http://www.ncbi.nlm.nih.gov/pubmed/21183072
Here is a review of epigenetic modifications affecting cardiovascular disease in humans; it is worth reading because it goes into several mechanisms for epigenetic changes.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329881/
This paper shows the life-long effect of prenatal zinc deficiency on the expression of certain genes in mice, and also shows that zinc deficiency in adulthood does not have the same effect:
http://www.ncbi.nlm.nih.gov/pubmed/22917840
For those who are interested, the current issue of Discover Magazine has an article about epigenitics. I found it to be pretty weak, however. It gives a high-level overview of some of the means of epigenetic tagging, but really only focusses on one. I was diasppointed in the article, all surface and no depth, and too little discussion of whether or not the tagging changes that were observed caused any actual difference.
Great post. It’s amazing to me how “natural” birth/parenting advocates are obsessed with risk when it comes to things that have no scientific basis to be risky, in particular when it comes to autism, but ignore risk when it comes to homebirth and refusing medical treatment. And I’m not just talking about birth interventions, but vaccines, antibiotics, and modern medicine altogether. The woo-based healthcare advocates in my area now suggest eschewing pediatricians and using a chiropractor for all manner of complaints and prevention of illness. And if you *gasp* take your child to a pediatrician and follow their recommendations, you are some kind of dupe who is harming your child.
I know there’s zero science basis for this, but I often wonder if the rise in autism has anything to do with the rise in breastfeeding…
THAT’S IT!
I BFed both kids and one is on the spectrum. That’s a 50% incidence. Call the CDC!
Lol!
I heard it was attachment parenting.
I think you’re misrepresenting the dead baby card. I can’t imagine anybody has a problem with doctor presenting the risks in a calm setting of statistics.
(I don’t claim any of the following stats are actually correct – just using as examples)
Telling a woman in labor that if she refuses something her “baby could DIE!” is playing the card. Saying that refusing a repeat CS carries a 2% chance of rupture and a 0.2% chance of the baby dieing is not.
Saying babies die without Vit K is playing the card. Saying 1 in 1000 babies with no obvious issues, without the Vit K, develop bleeding issues and 10% of those die is not.
Playing the dead baby card is an argument designed to achieve a desired response from the patient by appealing to emotions rather than facts.
If parents were the only one responsible for their children’s deaths, playing the dead baby card would be a little more questionable, I guess. But when babies die, people start looking for someone to blame. “They explained the risk, but I didn’t really understand my BABY COULD DIE!” So is it really so wrong to just say, “this refusal of care could KILL YOUR BABY”?
What about doing both? ‘Your baby could die – here are the statistics on this procedure/intervention.’ Just putting “your baby could die” out there is emotional manipulation to get a specific desired response. Perhaps the problem really is that the phrase was used inappropriately, and so now, there’s distrust when it’s used by docs. Putting facts out there with the emotional plea could go a long way towards building trust again.
A better place to turn? Tort reform.
Did a doctor warn you in exactly those words? I think that for the most part, doctors keep a professional tone. Remember that the person on the other end is often scared and in pain and may have a hazy memory.
PS. I think for a HBAC, the risk of a rupture may be 2%, but the risk of the baby dying in that case would be much much higher.
So when my mom says “don’t forget to put on sunblock, you could get burned” when I go to the beach is that emotional manipulation as well? People don’t usually listen when you spout statistics at them saying simply “If you don’t have x procedure y could happen” doesn’t seem to be emotional manipulation to me. Especially when the doctors financial future is in jeopardy if you don’t take his advice.
“building trust again.”
Sorry, I have to double back to this.
Let’s put ourselves in the shoes of your typical OB, working with a typical US population. You have several goals: good outcomes for your patient, low insurance rates, not putting yourself in the emotionally challenging situation of losing a mother or baby, not ending up in a scary emergency.
Now let’s talk about your patients. In terms of intelligence and the ability to understand what risk is, half of them are at or below median. So you can’t just explain risk as if you’re talking to the average person, because half the time, you’re dealing with someone not equipped at that level.
Now, some of your patients seeking VBAC inexplicably think the only risk is rupture! Totally forgetting that when a rupture happens, you’re now automatically in an emergency surgery situation, with all the new complications that introduces! And not only do they want to take on that risk for themselves, they want you to take that risk to meeting your own goals (like not seeing any dead babies this year, thank you very much).
Now, tell me, how important is it to you to “rebuild trust” with some mom who thinks she understands obstetrics better than her last OB did.
You grossly overestimate the ability of the average patient to understand statistics and probability. Not only do most people, including people with a college education, misunderstand statistics, almost everyone approaches these situations with “optimistic bias”. Even if they understand the relative frequencies of complications, they assume that whatever they are, these risks or complications won’t happen to them. Bad things only happen to other people.
Remember that a busy doctor sees thousands of patients and thus sees complications and their negative effects pretty frequently. They do not possess optimistic bias. Now try communicating their view to a patient that has had 1, 2 or even 5 pregnancies, and especially one inclined to believe that their good outcomes so far are entirely due to their own superiority, without any input from luck.
Part of communicating risk to patients is communicating the fact that they are as likely as anyone else in a given situation to experience a complication or a risk. It’s that latter part that is especially difficult.
I don’t think anyone is advocating throwing the words “your baby could die” out there without context, but you know what? I can imagine there are times when you just have no time to go through all the percentages etc. If I’m in labor and things turn south and they’ve got to start prep for an emergency c-section, I want them to get to the point and tell me there’s a risk of death so I can hurry up and consent, rather than waste valuable time going over detailed statistics before they get to the point of the most important risk.
Now if I’m 41 weeks, I just passed an NST and my doctor is talking about induction due to post dates, I want a detailed discussion of risks and benefits.
The “dead baby card” is an expression used mostly by people who have never witnessed the death of a baby.
Or don’t care
Or are just crap at coping with reality.
I had placenta previa in my last pregnancy. My care providers were not blunt, but it was clear that they were telling me that, if the previa did not clear up on its own, without a c-section, the baby would die (and I very likely would as well). In certain circles, this is called the Dead Baby Card. But how else are they supposed to put it?
I think the type of people who reject all medical interventions out of hand and actually believe the dead baby card is a thing aren’t going to change their views based on whatever stats an OB will tell them. I remember a blog post a med student who witnessed a homebirth transfer. The baby was in obvious distress, and the parents kept refusing every single recommendation. When the baby was born brain damaged (died a few days later), all personnel were scrambling to write every single thing down, because, they said, those were the exact kind of people who sue.
Like suchende stated, when a baby does die, the parents will automatically look to blame the OB, no matter how many times they disregarded medical advice. Saying, “Your baby could die” is direct enough that, hopefully, a jury won’t find them responsible. And, for all the crap doctors get for it, they’re ability to practice and not go bankrupt is a hell of a lot more important than a patients feelings about their care.
What is the central requirement if informed consent? It is not the presentation of statistics; it is making sure that a patient understands what those statistics mean. When the doctor says, your baby could die,” he or she is obligated to be sure that you understand that your baby could really die. Indeed, low risk of death means that some babies WILL die. If you don’t understand that YOUR baby really COULD DIE, then you haven’t given informed consent.
^This. Too often, I’ve seen women seem to think that the statistics mean that a tragedy won’t happen to them. I remember one birth story I read (which I now can’t find, sorry!) which stated about uterine rupture, “The statistics say it shouldn’t have happened to me.” This is a false understanding of statistics, but a very common one. Really, statistics say that a rupture happens to at least 1 in 100 VBA2C and it may be closer to 1 in 50, so it is going to happen to SOMEONE, and there’s no reason why it shouldn’t have been this lady.
” Too often, I’ve seen women seem to think that the statistics mean that a tragedy won’t happen to them.”
This.
I have a 30% chance of developing a condition where my vital organs can eventually clog up with a protein and start failing.
This was worded to me as ‘the only way to guarantee a chance of living my full life is to take medication’.
AKA the dead patient card. Gently worded in a non emergency situation and given time to sink in.
For a person that feels healthy and young and who doesn’t know any other people that have passed away at an early age from organ failure, they might be tempted to take their chances. A doctor that has seen many other healthy, young patients die from organ failure they would find it much harder to rationalise away.
“I think you’re misrepresenting the dead baby card. I can’t imagine anybody has a problem with doctor presenting the risks in a calm setting of statistics.”
For some in the NCB/HB world, even mentioning the possibility that something could raise the risk that their baby could die is “pulling the dead baby card”.
Examples from this thread: http://www.cafemom.com/group/14077/forums/read/15014249/_Dead_baby_card
“I asked the dr their policy on breech and they said they don’t deliver breech because the risk of fetal demise from head entrapment is too high…”
“I was told I should have an emergency c section because that would give the baby more chance to survive.”
And here: http://www.indiebirth.com/what-makes-birth-safe/#_
“No, if a doctor tells a woman that her pelvis is small and she won’t be able to birth vaginally, he generally means, do what I say or else I’m playing the dead baby card.”
And here: http://community.babycenter.com/post/a38965090/c-section_because_babys_umbilical_cord_is_wrapped_around_his_neck_and_his_head_is_too_big
“My doctor said that my baby won’t descent and that the longer I wait the higher chances he has to die.” (this was called “playing the dead baby card” by another commenter)
Playing the dead baby card AKA When the risk of death or disability is so high your OB won’t gamble with your baby’s life, but you want them to anyway.
And if you are in some situation where your baby could, actually, die what exactly is wrong with appealing to emotions?
You seem to imply that doctors use it as an empty threat to get their own way. I doubt that. As someone who had to come to terms with the idea that mine might, I know rather well have vehemently one can hang on to denial. I think “It can’t happen to me” is a kind of built in survival strategy, but the sad fact is that it can. Low risk and all.
Let me explain my experience to you. I went to a multi-session birthing class where labour was discussed and bad outcomes (brain damage, death, etc.) were never mentioned. I read about a dozen pregnancy books including What to Expect… and none of them really seriously got into intrapartum or perinatal death rates that I remember. I had all the regular appointments with my OB and no one ever discussed it. Why? Because my pregnancy was textbook normal, I gained 22 lbs, I had great test results.
Then in labour, I pushed for 2 hours and said to my nurse “I think I want to talk to the OB about a c-section.” She said “you’re so close! Keep going!” So, I did.
And my baby died.
I wish someone had even once discussed risk with me. Of course there were other factors but I truly believe there was a culture we have a culture that doesn’t want to discuss poor outcomes around birth, and when an OB does, they get shit. Pregnant women are not delicate flowers. We are mothers-to-be and if there is a chance our kids could die, we should be told about it in direct and clear terms.
I’m so sorry for your loss.
Thanks 🙂
I’m so sorry Jennifer.
It is a tough one. I find that in the culture of midwifery (here in Canada anyway) bad outcomes are somewhat of a taboo. Women come to us to not just seek information about what their choices are; in many cases they have an exaggerated desire to keep things normal. Call it burying your head in the sand and refusing to accept what labour might bring about. I’m not saying it’s you at all, just reflecting on my experiences, so please don’t get me wrong. I remember several clients who would burst into tears at a mere discussion of what instrumental birth looks like or why it’s a bad idea to go too far past your due date. Some refuse to engage in discussions involving risk and ask to not use specific ‘negative’ words during our prenatal appointments, such as stillbirth, risk, complications. They don’t want to know what the results of their tests are, even if there’s an alarming finding, or refuse to test. It’s a specific population and is challenging to work with. Sometimes a gentle choice of words helps. Again, a tough one. I’m still working on my gentle truths.
I’m in Toronto so yeah, I was in that culture (my OB for that pregnancy was, by choice, one of the most NCB-friendly ones at my end of town. For my next two, Mt. Sinai high-risk clinic all the way!) It’s a balancing act; glad you are on top of it.
So when you see a commercial that says, “Don’t drink and drive” is that also an appeal to emotion? Yep, and it has to be, because if people actually heard the stats, they’d never listen (actually, that’s the problem with drinking and driving – people are actually far too aware of the stats – they have done it enough times to know that the risk of a problem is actually not all that high; unfortunately, so many people do this so many times that the totals end up way too high to be acceptable; if the number of drunken drives were as low as the number of homebirths, it would be a very minor problem)
NCBers are notorious for rejecting risks despite statistics. Proof? HBAC and breech at home. Delivering footlings vaginally. The statistics are out there, on rupture, head entrapment, cord prolapse, death — yet they continue to do it anyway. You don’t need to play the dead baby card with these folk — that’s what’s so ironic. They KNOW that death can be a byproduct of their choices, yet they do it anyway, because it either won’t happen to them (optimistic bias) or the risk is worth it (narcissism and ignorance.)
And now the Oregon death rates have been released, and they clearly demonstrate that homebirth with a CPM greatly increases the risk of infant death. Calm, rational, statistics. Presented by a doctor, on this very blog. Do you see anyone in NCB land crying, “But we never knew! This changes everything! Clearly, these unemotional numbers explain the risk in ways we are prepared to accept!”
When you do, please let me know. Not holding my breath.
There was an OB I worked with as a student who had a knack for straightforward and clear communication with patients. For instance, when addressing someone with obstructed labour and a crappy strip showing continuous late decels, he’d tell the patient in a calm and factual manner that albeit EFM is not perfect, that’s pretty much our best guess at how well the baby is doing. And that late decelerations were an abnormal finding associated with baby not getting enough oxygen and that continuing with labour can eventually result in brain damage and death. To me, it sounded perfectly appropriate. My preceptor was furious because she felt that the OB was trying to scare the woman into a section by waving the ‘scary words’. How would you replay the situation to make it sound less scary for the woman while still giving her facts? I really enjoyed working with him, by the way. Our practice labelled him a ‘creepy heartless bastard’.
Your practice labelled the OB you worked with as a student, or the preceptor?
Sorry, I’m being confusing. I worked with him as a midwifery student and my midwifery preceptor/practice accused him of frequent fear mongering and saying unpleasant words, such as ‘death’ or ‘brain damage’. To me, they sounded like well…facts. II have gone through med school, to make things even more confusing 🙂 anyway, just trying to think of a ‘fluffier’ way a crappy EFM strip could be presented to a client whose labour isn’t going anywhere.
Rereading now, I understand. A fluffier way? “Your body knows what to do. Trust it.” Isn’t that the standard fluffy way? 🙂
Facts vs woo is a constant tension between scientific-based disciplines and those folks who are … fluffy. (That’s the right word. I was going to say “non-rational” but that’s an overlapping but different set of people.) Facts *can* be scary, and a lot of people don’t like that. They want life to be easy and fun and no tough choices. And that’s just not life.
It is the standard fluffy way 🙂 I was told that facts are ‘good’ but there is a certain way to present them – with finesse and subtlety – to make clients less anxious. I was like, dude… I dunno, I call a brain damage a brain damage, what else should I call it? Almost failed due to the lack of ‘finesse’. Oh well.
To make clients less anxious? Give me a break….if things go pear shaped the first thing the client is going to say is that NO ONE TOLD THEM. And they would be right to complain about that.
Health care practitioners have to tell people things they aren’t going to like and that are going to make them anxious all the time. Should we go back to the era of hiding cancer diagnoses?Should we tell people having an MI that their heart is just experiencing a little “cramping” and recommend massage?
Somehow, “heart cramping” reminded me of this guy: http://youtu.be/zvWzm7ICzhw
thanks! that was AWESOME and I hadn’t seen it before. I think I’m going to play that next time I have a med student that is asking about arrhythmia.
That’s wonderful! Thanks for sharing.
Brilliant!
Fluffy is a great word. A lot of nurses won’t use the word obese, or overweight and substitute fluffy. I think it’s bad on a lot of levels, but fluffy as a descriptor for minimizing a patient’s risk factors is a great term!
This sounds exactly like the OB that took over my care when I had my first child. I did not feel pressured into the cesarean I had, I felt like he took the time to explain things and treated me like a competent adult. He and my (awful) midwife did not get along . . . shocker.
That’s a great illustration of what OB’s have to put up with when faced with the natural childbirth mindset.
When my baby died, I thought “Why did nobody ever mention that the baby could die? Where was that mentioned in the What To Expect books?” A 2% risk to the life of the baby in your care right now outweighs a 2% risk of rupture in a hypothetical future pregnancy.
*sigh* My husband has a cousin who is severely autistic, and my mother-in-law insists that he was perfectly normal until he got the MMR shot, where according to the parents, he was uncommunicative within hours of getting the shot. Never mind, of course, that ASD run in the family. One uncle and a few cousins have Asperger’s, and my husband exhibits characteristics of Asperger’s too. But my MIL has used the family history of ASD to discourage me from vaccinating on schedule.
Wait ’til she hears that my daughter got the MMR AND Chicken Pox shot at her one-year checkup.
I admit to having feared autism in the past (before I knew more about it), but not so much now. I only hope that if I do have a child on the spectrum, I will know how to be the best mother possible to him or her.
That’s the awful part of the fear mongering. People who have autism in the family are now nervous about vaccinating. I only know a couple and they still went on to vaccinate ‘having done their research’ and deciding that the autism/vaccination link was not substantiated.
They always go on to say that the child developed autism “overnight” or “within hours” after getting a vaccine. Except that developmental disorders don’t occur overnight.
“I bought a car out of a newspaper once. Ten years later? Boom! Herpes.”
Peter Griffin
What’s funny, by comparison, is that when a parent suddenly notices their previously skinny child is now overweight or the other way around, they don’t think that happened overnight. They realize that it happened slowly enough that they didn’t notice it. But when it’s something mental, untrained intuition says, “It happened overnight. I would have noticed it otherwise” I’ve never heard of a parent of a child with an eating disorder suggest that their child lost fifty pounds “overnight.” (Although I’m sure if I search for it I can find such a case.)
My SIL told this same story even though we all knew it didn’t happen that way at all. I really think she went online, read other people’s antivax stories and convinced herself it happened that way.
So did Jenny McCarthy. She spent a few years telling everyone her son suddenly became autistic–he got his MMR vax “soon thereafter—boom—the soul’s gone from his eyes”.
Now she says:
“You know, a lot of people think, and probably from me saying in some interviews, that it was after the MMR I noticed changes.
I don’t think it was just the MMR shot that caused any kind of
trigger with autism. I think it was a compilation of so many shots to a
kid that obviously had some autoimmune disorders. So I would say maybe a couple of months, a month or so after the MMR, I started to notice some physical ailments such as constipation, rashes, eczema. That was like the first little sign. And then the train just kind of descended from there.”
In the case of the cousin, it was before the internet age. Early 90s, I believe. They supposedly have proof from a doctor that the MMR shot caused it *sigh*. I have seen video footage of this cousin when he was supposedly normal, and I could tell something was off. Of course, that could be my bias talking.
It isn’t all that easy to see something “off” in the first few weeks unless a child has very severe problems. I had no clue of what we were dealing with for some months. And with some things, years. Some – many – aspects of development will still be normal, and deficits may be quite subtle or take a long time to show as a problem. It MIGHT be possible that problems in a susceptible child could be worsened temporarily or uncovered by a rare reaction to a vaccine, though of course it is more likely to be a coincidence of timing.
My son hit all his early milestones. it wasn’t until he was about 2 and we started going to playgroups that we noticed he wasn’t developing along the same trajectory as the others. His pediatrician didn’t see any red flags until he was 4 (and after we’d already had him evaluated through our school district’s early intervention program, who qualified him for services under “speech delay” and “autistic-like behaviors”.)
It would be very tempting to look at something that happened between 2 and 3 and say, “that’s what did it.” But when we really think back, there were small things that might–or might not–have been related to his autism that showed up when he was smaller (disordered sleep, odd eating habits, the fact that some of his first words were polysyllabic, possibly some echolalia). But he was our first child, and we really had no basis to compare until he really started social interactions with other children.
Stayed tuned for Hannah Dahlen introducing the revolutionary new “Neonate Squeezer” for babies born unnaturally. All you have to do is extrude the baby through the squeezer (preferably with the umbilical cord still attached). An extra special attachment provides the proper vaginal flora, too. This treatment mimics the birth canal and will keep the DNA intact, promote mother/baby bonding and world peace. All yours for $$$$.
I hope they launch one for adults. My mother had a c-section, so I was never really been born.
Cascaritas – I’m sure you can find someone to do a “re-birthing” with you.
After my squeezing re-birth, I will inmerse myself in a bathtub full of E. coli. That will complete the natural experience I been longing for.
Ah, but will you use cloth diapers and wear yourself in a baby carrier? Practice … Attachment Egoism?
Whapio, thank you for enlighten me about my options. In order to be able to have the natural life experience that I deserve, I will search Google University database and educate myself.
brought to you by the same people who object to swaddling and hats!
As an autistic person, what I hate the most is how these people describe us. Look being autistic isn’t easy. Having any disability is hard. But you have to understand that we were like this for our entire lives and we can’t even imagine what it would be like to be otherwise.
However, it is extremely hurtful to hear time after time that we are “damaged” or “soulless” or “broken” or that we should be “recovered” using whatever woo de jour that is popular right now. Insinuating that risking a child’s life is OK if it makes them less likely to have autism is an insult of the highest order to me and all other autistic people.
So to all the anti-vaxer, natural childbirth advocates, and the rest of the woo-woo crowd. YOU ARE NOT MAKING THE LIVES OF AUTISICS BETTER! YOU ARE MAKING THEM A WHOLE LOT WORSE. SO SHUT THE FUCK UP! If you really want to make the lives of autistic people better use your power to shut down the Judge Rotenberg Center.
Wow. I just looked up that center.
Sing it. I despise how they view children with autism. Or special needs. Yet, will risk catastrophic brain injury willfully.
Amen. I wrote this on my Facebook page in response to something similar:
There is little that makes me sadder or angrier than the “autism stole my child” gambit. This is what I want to say to parents who use it:
I understand that you are sad about your child’s autism. I understand that your life, and your child’s life, are harder than you thought they’d be. I understand that you would do anything in your power to change things. I even believe that you love your child despite his or her autism.
But in suggesting that your autistic child is some kind of changeling, you are making him or her less than human. Something that was swapped for the child you were somehow owed rather than the same child you loved and cherished at his or her birth. It doesn’t help you come to terms with
the life you have, it doesn’t help you fight autism, if that is your wish, and it certainly doesn’t help your child. It serves only to make people more afraid of autistics, and on the chance that you are unsuccessful in curing your child, that can only make things harder for him or her.
Please stop.
LOL! Soooo true…. once again, you really do make my day, Dr. Amy. Thanks for calling out all of this utter nonsense!
That ‘epigenetics’ article about c-sections was flabbergasting!
One of your best pieces ever. I can envision this one getting picked up in a major magazine. You really got to the heart of the issue.
Oh god I hate the complaints about the dead baby card… the NCB world has no concept of informed consent or risk analysis. Yes, a doctor will tell you vaginal birth of a breech baby has a risk of death. Why? Because there actually is a risk, and they’re required to disclose it. Also, because doctors generally don’t like their patients dying.
Do people really think doctors spend hundreds of thousands of dollars going to med school, throw away their entire 20s with school, residency, fellowships, etc just so they can sadistically inflict dangerous treatment options on patients for a paycheck? If you wanted to be a rich professional scumbag, you go into wall street, not medicine.
Your second paragraph just made me think of Steve Martin’s character in Little Shop of Horrors. He was a sadistic dentist, not a sadistic OB, but still…
Very true. The Margolis stuff crystallizes the NCB fear mongering rhetoric.
I was at the state courthouse yesterday and was so surprised by the age of most of the lobbyists and administrative assistants. It was a shock of: “Oh wow. People my age have jobs!? and have SALARIES!?” And I have another decade…..
Also, why aren’t people worried about the “dead chest pain card” or the “dead stroke card”? We encourage people with these symptoms to get checked our quickly because some will have heart attacks or strokes, and some might die. But most of them don’t. IN fact, only a tiny percentage of people with chest pain are having heart attacks.
And besides, most people who DO have heart attacks turn out ok. Heart attacks only have a mortality rate of 16% these days.
Also, can we stop with this “better dead than autistic” meme that the CAM movement implicitly (and sometimes explicitly) promotes? I’m autistic. Mild case, true, but it’s really a lot better than being dead and I’m pretty sure my parents agree.
That’s the part that disgusts me most of all about these attitudes. They hardly make any effort to conceal the fact that they’re implying a dead baby is better than an autistic one.
Of course, this is why the “autistic baby card” is ok, but the dead baby card is not. It’s predicated on the presumption that autism is far worse than death.
Amen! My husband has family members who are constantly spouting off anti-vaccine/doctors/medical establishment propaganda, because one of them has an autistic child. I am always telling them, even if vaccines caused his autism — but they DIDN’T! — I would rather have an autistic child than a dead one.
You are mildly autistic. You can’t speak for the parents of severely autistic children who are fearful of a future that includes out of control children with the mental abilities of a toddler but the physical size of an adult. I’m not saying death is better, but it’s disingenuous to try to speak for people in a situation that you don’t understand.
Interesting point. Andrew Sullivan just wrote a book “Far From the Tree” which discusses this idea in some of his chapters. For anyone who hasn’t read it, this book deserves the Pulitzer.
Andrew Solomon. And yes, it was an amazing and heartbreaking read.
But you are not autistic at all. Aren’t you speaking for people who are in a situation you don’t understand by trying to speak for autistic people?
Is she speaking for autistic people – or speaking of the fears of those who care for someone who cannot care for themselves? As you point out, it isn’t autism that is the problem but the attitudes of those who fail to care or understand.
Perhaps I am being a bit defensive but it has been my experience that whenever an autistic person comes out and says “As an autistic person I think my life, point of view and the way I see the world has value and I don’t want to be cured” the automatic response seems to be “but you are only a little autistic you can’t possibly speak for those who are more severe.” This seems more of a way to stick ones fingers in their ears and not listen to autistic point of view (if the only autistic people who count are those who can’t speak for themselves than I can continue to pretend I speak for them) than actual concern for the “low functioning” autistics.
Of course you can’t speak for the LFAs. You can speak for the HFAs (dislike the term) who make up the majority of those diagnosed, as far as I know.
Yeah I dislike both of those terms as well. I’ve been in both camps (I was non-verbal for a period of my childhood) so that shows you how meaningless they are.
If the majority are high functioning then the experience of those who fall into that category is very relevant. It would be different if HFAs were the exception among those “on the spectrum”.
Do you read Amanda Baggs’ blog? She’s been labelled “low functioning” and she doesn’t buy that it’s about real concern for people like her either…and she certainly thinks her life has value. I can’t hunt down specific posts from my phone, but she’s written quite a bit about others claiming to speak for autistic people. http://ballastexistenz.wordpress.com/ (she doesn’t speak, but is a great writer)
Amanda Baggs does not have autism. She appears to have schizophrenia, and to have doctor-shopped for autism. I’m ready to be flamed but this is a skeptical blog, and Amanda Baggs is a hoax.
http://abaggs.blogspot.com/
All verifiable, much of it verified by Amanda Baggs herself.
I trying to remember her name all day!
I’m not totally sure what “cured” would mean at this point. Certainly in an adult, a “cure” could involve radical, personality changing rewiring in the brain. That sounds more threatening than helpful. OTOH, an external aid might be quite nice to have. Like, say, if my glasses could give me an analysis of the emotional state implied by the expression of the person I was looking at. I’m bad at reading facial expression. And by “bad” I mean “lower than average ability for someone with Asperger’s syndrome”. Sigh.
I actually was speaking for a friend of mine whose 10 year old is severely autistic. For her, it’s like having an ever-growing uncontrollable child with the mind of a toddler. Oh, yeah, in addition to her other 5 children. Her autistic daughter has an older sister, 2 younger brothers, and 2 younger sisters. My friend has written extensively on this topic and can articulate it much better than I can. She just doesn’t have the time to come here and argue with people.
You can’t speak for the parents of severely autistic children who are
fearful of a future that includes out of control children with the
mental abilities of a toddler but the physical size of an adult.
It’s true that severe autism is a nasty condition. I was extremely happy when my child started to speak because that meant that wherever she fell on the spectrum from neurotypical to severely autistic, it wouldn’t be the latter.
But that’s not what most of the 1 in whatever it is now (150?) people who are now considered autistic are. The rate of severe autism hasn’t changed much over time. It’s maybe increased a bit with diagnostic migration from mental retardation to autism, but that’s it. The majority of the increase in “autism” is due to the increased diagnosis of people with mild autistic tendencies, i.e. Asperger’s syndrome and PDD. Most of whom will be essentially fine as adults. So even if vaccines or c-sections or ultrasounds or whatever caused autism, they don’t cause the severe autism that people fear, only the milder variants.
It is 1 in 50 now. I’d love to see a stat for low functioning autistim. Because that is what the NCBer are fearing. Every single “my child was fine until vaccinated” anecdote always seems to involve very severe, low functioning autism. I just have to wonder where all these stories are coming from if low functioning autism is as rare as it’s always been.
I could ask our Special Ed manager how many autistic classrooms we have, as well as how many of those students are from outside the district.
Severely autistic individuals seem to be a minority of the spectrum.
A generation or two ago, these children were diagnosed as MR or childhood schitzophreia and placed in institutions. Parents did’t have to raise them, they did’t talk about them-it was a secret. Now they are out and about, easily seen.
Most of those kids tend not to be so low functioning but are just young and developmentally delayed. That’s why they improve so much once they parents do whatever woo they are into. People don’t realize that autism is developmental delay not developmental stagnation. I stopped talking at two. I started up again at four (not complete sentences mind you) then I got injured and stopped again for a while. At this point in my life, nobody would suspect that I ever had trouble with language. Now I am lucky in that my parents could afford a great deal of speech therapy etc. but it shows that just because a kid seems low functioning at 2 doesn’t mean she/he will remain that way.
My son has improved markedly this year. (age 9) Why now? Dunno. Nothing has changed. If we had been giving him a new batch of supplements or a new diet, we’d probably have thought they had miraculous properties.
Maybe it was his switch to swiss cheese sandwiches?
just because a kid seems low functioning at 2 doesn’t mean she/he will remain that way.
The opposite is true as well. In fact, low functioning is perhaps unclear and unhelpful in the same way as low risk. The autistic people I have come across have tended to be at the severe end who need constant care but I may have met others where I wouldn’t even be aware of it. Whatever the degree, they are individuals, forms of care and other people’s attitudes will factor in. There is a difference, it seems to me, in a child who becomes non-verbal after acquiring language, and one who has an imperfect command anyway.
None of us are experts. I think part of the fear of autism comes from some odd ideas of what it is, exactly. My daughter is not autistic; I do find myself dealing daily with some of the same behaviours, and struggling to understand. You are right to point out that delay is not fixed in time. All of us can revert to childishness – just most of us have socially acceptable ways of hiding it!
Well, my son *is* severely autistic. He will be nine in June. And there’s a lot I would give to make his life easier. Admittedly, some of that is selfish, because if it is easier for him, it’s easier for me. But mostly for his sake. It’s difficult to navigate a world that isn’t set up to accommodate him, and knowing that there are people out there who believe he (and society) would be better off dead doesn’t help one iota. And I really wish people wouldn’t say things like “it’s nasty”. It’s difficult, and at times, downright scary and hard, yeah. But it beats being dead by a wide fucking margin. I’m pretty sure that my aunt, whose son *is* dead, would rather have him here and autistic, than having to visit his grave.
Also, my son doesn’t have the mental abilities of a toddler. He can read, he can write (though his handwriting is illegible, he can type, hunt and peck style) and do simple math. His intelligence is quite normal, as far as we can tell. He just struggles to communicate what he knows, and uses only one word sentences or sings short phrases when he doesn’t have what he needs on his iPad talking PECS. This is an improvement over nearly six years of silence, though! Of course, his sensory issues contribute greatly to the problems he has to deal with, but overall, I am quite thankful. He’s healthy and happy and while he may never be independent, he’s not some hellish burden that’s better off dead or stuck in an institution somewhere! I have four other children (including my youngest daughter, six months, whom he absolutely adores, btw)
And for the record, I bought some of the woo, and he wasn’t vaccinated until shortly before his third birthday. We already knew he was autistic, and was diagnosed the month before he turned three. No vaccine caused it. Oh, and I went into labor with him spontaneously, and the only intervention I had was a quick McRoberts when he got stuck briefly.
With all that said, I don’t pretend to be an advocate for anyone other than my son. And I will only do that until such time as he is able to do so for himself (hope springs eternal on that front). But I wish people wouldn’t pretend to know what it’s like for him or for me as his mother based on news stories or even a shared diagnosis. “If you’ve seen one person with autism….” as the saying goes.
I expect flames, but I would prefer a dead child than a low functioning autistic one. I have heard too many horror stories about older autistic men.
Does that make me a horrible person? Possible. Still truth, though.
(Since I don’t plan to have children at all, this is speculative, though).
Yes, but we don’t know what causes that condition – with the exception of Fragile X. You can easily test for that.
I think we’ll be able to puzzle out the causes of severe autism faster and better than the milder forms.
I don’t know why you expect to be flamed – I think your view is the dominant one. If there ever is a pre-natal test for autism, then I expect it would be the same as most other tests – the majority would opt for termination. With the exception of those conditions incompatible with life, the decision is made with the parents interests foremost (as with all abortion, I suppose) not the child’s. Those who have the disabilities generally have a different view.
One of the things that troubles me is that with some tests, it can tell you that a condition is present, but not the degree of severity. More than a bit of a problem with something like ASD.
Add to that that one’s views on disability (and termination) tend to shift when the issue is no longer abstract and you have something of an ethical minefield.
I disagree that termination for illness is usually for the parents. I
would terminate a child I knew would suffer with severe mental illness
not because I think that would be easier on me, but because that child
would suffer needlessly because of my action. I work with parents of
severely disabled kids and every one, with a drink in them and a bit
less inhibition, will admit they feel profound guilt every time their
child seizes, or bangs their head against the wall, or has to go in for
ANOTHER surgery, because if they had just terminated, that little child
wouldn’t have to endure so much pain. That’s actually a huge part of why
parents of disabled kids often are anti-choice, I think– they don’t
like to think about the fact that they had that choice, and they could
have chosen wrongly, so they like to tell themselves there was a moral
reason to not abort that overrides the moral reason to prevent their
child from suffering. Admittedly, I live in a pro-choice area, and there
are plenty of people out there who were always opposed to abortion then
happened to have a disabled child.
And
honestly, the more I interact with the severely disabled, the more I
realize what, exactly, refusing to terminate is sentencing a child to. I
know many autistic kids who are suicidal, Down’s kids who have tried to
hurt themselves, physically disabled kids who talk about taking
themselves off life support. Parents may wish to forget that the
decision to not terminate has profound repercussions for the soul that
is now trapped in that body, but the kids are reminded of it every day.
Parents are good at guilt, frequently irrationally, but that is hardly a convincing argument for terminating the life of a disabled child.
Define severe disability – and what does it have to do with mental illness? Of course when you see someone who appears to be suffering it is understandable to think that termination might be preferable – but who gets to make that decision? Yes, I felt anguish and maybe guilt when my daughter had a fit. They are horrible to deal with. But, she had them in her sleep, and as far as I can see caused her more irritation than anguish. They have been controlled for the last ten years. I did use to live in absolute terror that some kind-hearted but ill informed person might decide that they should put her out of her misery.
If there is no quality of life, and no hope of quality of life, then that is one thing. But the able-bodied making judgements is not something I favour.
I would never judge anyone who decided that they cannot or do not want to take on the life of a carer. But I do know that one’s view of disability tends to change when intimately involved, and that a fair proportion of the problems are caused by the unenlightened assumptions of others.
I live in a pro-choice area, so for these parents who question their choices, the question is not about terminating the life of an unborn child due to disability, it’s about preventing the child from ever existing with the disability (not everyone believes the soul enters at conception– in fact that is a minority view worldwide). I am not advocating, nor would I ever even tacitly condone, involuntary euthanasia for disabled persons. There is a world of difference between preventing a life and ending it.
Severe disability is any situation where the disability prevents the individual from living a meaningful life. Low-functioning autism, crippling mood disorders, painful physical conditions that require intense long-term intervention…. These are severe disabilities. A child who is blind, deaf, mentally retarded, spends half their life in hospitals and has had many painful surgeries that they lack the mental capacity to understand– I do not blame that mother for regretting that child’s life (though in her case she could not have predicted it, anyway, so I do discourage her from beating herself up over a decision she couldn’t have made).
The truth is, IF you believe like most do that a fetus does not yet have a soul, and you can predict a disability that might be mild and manageable, or might be severe and horrible– is it truly the moral and right thing to do to take that chance? Do you, as an able-bodied person, have the right to make that judgement call that it is better to live a life of undue pain and suffering than to either never exist or perhaps simply pass to the next body? Why is it unreasonable for me to say “I myself would not want to endure this under any circumstances, thus I will not cause another to endure it” but reasonable for you to say “My child will endure this even though I can prevent it?”
It’s NOT about the parent. It’s about the child. And I say this as a person who IS intimately involved with the disabled. Who loves a disabled man. We are glad his mom made the decision to keep him because he did recover most of the way, but that doesn’t mean a lot of pain and suffering wouldn’t have been prevented had his soul been allowed to find a different child to enter.
If) you can predict a disability that might be mild and manageable, or might
be severe and horrible– is it truly the moral and right thing to do to
take that chance?
Well clearly, you have found your own answer to that question, which you are perfectly entitled to do.
And others have an equal right to find your view irrational, repellent, and a tad over inclusive.
I don’t know that it makes you a horrible person. What would make you a horrible person would be to insist that your view is the correct one and that people should be compelled to either terminate a pregnancy where the child is expected to be severely disabled or mentally ill and suffer a lot.
But here’s the thing. Suffering is relative. On paper, my son and I should probably be miserable. But we’re not. He’s a happy kid, and he’s got a LOT of people who love him and look out for him. Life is harder for him, no doubt, than it would be if he didn’t have autism. But you can make improvements and gain at least some independence. You can’t recover at all from being dead. And I admit to some visceral reactions to people who say they’d rather their child was dead instead of autistic. I’ve been to the funeral of a small child. It was the most awful thing I’ve ever experienced. And I wasn’t his mother, only his cousin. I can’t even imagine his mother’s pain. Mine is but a drop in the bucket compared to the pain of losing a child. I have mine here to hug and sing to and eat ice cream with. She will never have that with her son ever again. I can’t, in good conscience, ever say her position is preferable to mine.
I suspect that there’s an additional factor: obstetrics is so successful that most people don’t know anyone who lost a baby in labor, while many people know a child on the spectrum.
And yet people abort their fetuses who have been diagnosed with other forms of disabilities, so obviously not everyone values a living child above all else.
Some of those disabilities are quite severe and often promise nothing more than a short, low quality life. Tay Sachs is one such. Anencephaly is another.
What about Down Syndrome? My impression is that Down Syndrome would be an easier condition to deal with than low functioning autism and yet 90% of women who know their fetus has Down Syndrome would choose to abort.
Down Syndrome is really complex. Some kids with Downs also end up with severe heart defects, and low functioning Downs children really pose the same challenges as those with autism. It’s like autism – we tend not to see the really low functioning kids, and we forget that Downs adults partly aren’t around in public because a lot of them are really ill physically.
I also imagine that a lot of people who were told their child had autism during pregnancy might chose to abort. Raising a disabled child, whether high or low functioning, isn’t easy, and I think it’s important to be wary of judging people for making those tough decisions
Your impression is incorrect.
I didn’t value a living child above all else. Nor did I value the notion of a girl versus a boy, or a son with hemophilia (I am a carrier) over one without.
I did value my child’s quality of life, though. I did place enormous value on an absence of extreme pain and suffering. Valuing a living child above all else is one of those things people say when they’ve never been put in a position of having to consider otherwise.
It isn’t a simple binary position of perfect vs not. No child is born “perfect”. All are imperfect to one degree or another. There’s an enormous gulf between raising a child with manageable neurological differences and watching a child die painfully from a lethal congenital disorder.
You’re right, in terms of absolutes. Most people do not value a living child above (absolutely) all else. This is not binary. Trying to force it into a binary choice removes most of the meaning and humanity from the discussion.
It is a difficult decision and the right decision for my family and circumstances may not be the right decision for another family. I would not presume to make such a decision for others.
Women who don’t want to have a living child have an abortion. Continuing the pregnancy for 9 months implies that your goal is to have the child born alive. If there are women out there who are going into labor hoping the child does not survive, that is a big problem.
In response to the implicit threat “but what if your parents had aborted you”, well, what if they had? It wouldn’t be my problem. Indeed, nothing would ever be my problem. OTOH, if they’d refused to vaccinate me and I had hearing loss from measles or paralysis from polio or lost a fetus to rubella…that would be my problem and I’d be quite upset at that.
This is funny. A lot of people don’t understand that you can’t compare existence to non-existence. If I had never been born, I wouldn’t be around to care about it.
I contend that one of the largest fallacies created by religion is “the gift of life.” Yes, I am alive, and I will do the best of it as I can. But there is no way that you can say that I am better off now than if I had never been born. They are completely incomparable states.
I wish this was true everywhere, In the US, not every state allows even later term abortions, and thats often when these things problems are identifiable. If you find out your baby has even a lethal defect after about 24 weeks,, too bad. Your baby will suffer all that the disability has to offer.
This right is constantly being chipped away by people who think it’s their right to tell a woman they must remain pregnant, regardless.
Google Sarah Catt.
Yes, people abort fetuses with other forms of disabilities, and would certainly do so if they could test for autism. The rate of abortion for Downs syndrome is upwards of 90% of those who’s babies tested positive. However, most of these parents would still love and value their kids if they ended up with these issues anyway, and that says nothing about how the kids themselves feel.
Its hard to wrap your mind around the idea that someone can choose to abort for Downs (etc), but still value those that are alive and living with it. I think of it like this: Parents have little control over the way their kids turn out health-wise, outside of avoiding birth defect causing things, smoking, and offering healthy food. Most of us do all we can within our means, to give our kids the best chance possible, and if we could prevent disabilities we would. Right now, abortion gives us the chance to do something about it. There is little pleasant about this, I understand, but this is the way it is.
If C-sections would change the DNA that puts my daughter at high risk for diabetes and breast cancer, sign me right up for a MRCS.
Oh, wait, the whole argument is BS? Darn. Because there are some genes in my family tree I’d be more than happy to mutate.
Us too! One of my parents had a spontaneous mutation in one of their genes that has caused a load of issues to those of us that inherited it (it’s a dominant gene and most of us inherited it). According to the genetic counsellor we saw everyone has a spelling mistake or two in their genes. Some are incompatible with life, some are minor and some cause chronic issues like ours. Mutated genes seem like a pretty common part of life.
“Killer “midwife” Gloria Lemay routinely ejaculates claims that pitocin causes autism.”
Bah ha ha! Nice phrasing.
I will put my pitocin-induced born daughter up against any home, water-birthed baby any day of the week.
But wait, isn’t pitocin a bonding hormone of love?? Stop confusing me!