He’s a spastic quadriplegic as a result, but she’s glad she had a homebirth

image

 

I have no words to truly capture the ugly narcissism of some homebirth advocates, but apparently they do.

image

Had this brave little chickie at home 6/1 … And didn’t go quite as planned. She was born unresponsive. No oxygen to her brain for unknown amount of time. Straight to the hospital (I was still naked in the ambulance!) then transferred an hour and half away where my fought [for] her life… Collapsed lung, spiration, heart problems, seizures, brain damage, low blood sugar … Just to name a few! Today she’s doing better than anyone said she would. She’s perfect… Currently only on feeding tube. And guess what… She was 9lbs, 90z and I didn’t tear!!!! And still, i’m glad I had her at home!

I thought that was perhaps the most horrifying thing I had read from a homebirth advocate, but it was immediately followed by this:

image

Congrats! We too had unexpected complications with one of our births, a severe placenta abruption. He suffered lack of oxygen for an extended period or time and was life flighted in where they cooled him for 5 days. He is now 2 1/2 and has severe spastic quad cp (cognitively unaffected) but we are so glad we had him at home too…

The callousness and self-absorption defies belief.

He is now 2 1/2 and has severe spastic quad cp but we are so glad we had him at home

Meanwhile, some further fallout from my exposure of 7 homebirth deaths in the past week.

First, the moderators of one of the groups that encouraged these women are still flailing around trying to deny what happened.

Meg Heket is the sister of Janet Fraser, who you may remember, let her own daughter die at homebirth and then declared that her daughter’s death was less traumatic than the “birth rape” she supposedly endured during the birth of an older, healthy child.

image

When asked about the 7 deaths last week, Meg had this to say:

I don’t even know what babies she’s talking about, I’m sorry. She probably doesn’t know either. She just makes stuff up as she goes along. I genuinely think she’s quite unwell to behave in the callous way she does, it’s not normal. Lot’s of people don’t like homebirth, but they don’t use the deaths of babies to further their agenda. Nor do I use the deaths of women and babies in hospitals to further mine. I actually think women are smart enough to make savvy choices for themselves without me scaring the bejesus out of them.

Can you say “projection,” Meg?

Meg thinks women are smart enough to make choices for themselves ONLY when deprived of information about homebirth deaths and disasters. That’s why she and fellow moderators are ruthless in erasing deaths from their groups.

Second, friends of Monica, the mother whose quote I share when describing the 7th homebirth death have vociferously and repeatedly insisted on my Facebook page that the baby died of congenital anomalies, detailed in a autopsy supposedly completed less than 24 hours after the baby died.

image

That’s certainly a possibility, so I invited the friends to share the report (with names redacted, of course).

image

Curiously, after dozens of previous comments and insulting memes, every single friend promptly disappeared and has not returned since.

7 babies died at homebirth in one week and additional babies were injured. Each represents a tragedy, but collectively the stories of their deaths may do some good. They appear to have become a tipping point in the world of homebirth. It’s possible to deny the relationship of one homebirth death to the fact that it took place at home. It is impossible to deny that 7 homebirth deaths across the country in the space of only one week is very strong evidence that homebirth kills babies, babies who didn’t have to die.

It is sad that it has come to this.

Thinking about homebirth? Hopefully, the deaths of these 7 babies will make you think again.

  • Lee Grandmaison

    “My child is injured for life, which could have been avoided had I been in a hospital, but thank Jebus I had him/her at home!”

    These people are fucking sick.

    • yugaya

      I think when reading posts like that one we have to consider social conditioning and peer pressure as huge factors that screw what and how these mothers are saying – in these killer online groups you are not allowed to speak unless you are 100% unrepentant about having a homebirth, you are not even allowed to stay in them if you make the decision to transfer care to a hospital or agree with a recommended c section to avoid outcomes like this one.

      When I see mothers post how they loved their homebirth that injured their baby and say inhumane things like this I keep hearing behind their words the ugly killer enablers like Meg Heket and Ruth Rodley and homebirth apologists like Cassie Elisabeth. Mothers are the victims and because they’ve been exposed to emotional manipulation for so long they literally know no sane way how to talk about their births.

  • swbarnes2

    Yet another bizarre point, these women seem to think nothing of having tubes and days of cooling therapies for their babies, interventions galore, but I bet they would be aghast at the idea of forceps being needed in delivery.

  • “spastic” is considered to be a very insulting term now. weird al used it in a song and faced a lot of backlash from disability activists.

    • Sarah

      It does sound wrong but it’s actually a medical term

      • Zornorph

        But isn’t ‘retarded’ also a medical term? I didn’t know ‘spastic’ was now not considered PC, though I guess saying ‘he’s a spaz’ has been a mild insult for a while.
        For a long time, I thought the line in Bette Davis Eyes was ‘All the boys think she’s a spaz’

    • Sarah

      I despise it, having heard it used far too often towards a loved one of mine. It bothers me to hear or read it. However it is the correct medical term in the US at this point. Ideally it would be changed.

      • Sue

        “Spastic” as a commonly used noun (He or she is a “spastic”) is definitely well-relegated to the past.

        The medical term “spastic”, as an adjective, has a real and relevant meaning – it means tightness (iin relation to muscle tone).

        SO, spastic quadriplegia legitimately refers to a state where all four limbs are paralysed and stiff (as opposed to floppy).

        I suspect the common term was originally derived from the description of people with muscle stiffness from cerebral palsy.

  • nate

    I don’t know why anyone would be surprised about the mother’s misinterpretations and personality issues. And imaginary interpretations of what happened. Personality disorder is one explanation.
    Up to 10% of people have a personality disorder, and 1-2% of births are homebirths.
    So only a minority of them deliver at home… Though I bet the % is even higher among CPMs.

    http://www.mentalhealthamerica.net/conditions/personality-disordersorders

    http://outofthefog.net/Statistics.html deliver in the hospital. Imagine if all

  • nate

    ..lung, liver, heart, kidney “congenital malformations” are unlikely a cause of death from genetic issues. These are all more likely than not organ failures from not getting enough oxygenation during labor. Congenital only in the sense of happing at birth but from inadequate labor monitoring.

  • Cartman36

    These women are monsters. It is akin to injuring your child by driving drunk and then saying well, at least I got to enjoy that lovely 2005 cabernet.

    • toni

      that’s a great analogy.

  • MaineJen

    What the…to list a litany of medical interventions that is keeping her daughter alive, and to follow it up in the same breath with “But I didn’t tear and I had a homebirth and I would do it all again…”

    I. Don’t. Understand. Does not compute. The simple fact that your daughter was deprived of oxygen for “an unknown amount of time” tells me that your daughter would have been better off in the hospital. With monitoring, you would know exactly when the oxygen deprivation occurred and for how long it continued. Your daughter would have been born by unnecessarian, 9 pounds and “perfectly fine.” You would be bemoaning your traumatizing c section rather than watching your poor baby fight for her life.

    This truly is a cult mentality.

    • toni

      Yeah, it was the ‘And guess what… she was nine pounds whatever and I didn’t tear!!!!’ like she’s so fucking proud of herself and is what she cares about the most that made me go from nauseated but sympathetic to livid. no idea how infantile she sounds. Hate to sound like a pompous concerned citizen but I’m very worried for her children

    • Tiffany Aching

      The way they fetishise their vaginas and pride themselves on keeping them intacts reminds me of the girls who prize their hymens so literally that they think they’re still virgins if they had no piv sex, even if they do anal. The demonization of episiotomies has the same vaguely superstitious ring about it, like keeping these parts untouched is so important that you’d rather have it rip under enormous pressure than have a skilled practitioner do a quick clean cut. Baffles me.

    • The Bofa on the Sofa

      I’ve said it many times before, I apparently live in an alternate reality from these people.

    • Rebecca Detlef

      My son was born in a hospital and still suffered deprivation of oxygen for an unknown amount of time. He passed away at 6 weeks old. That said, these woman Dr. Amy showed the screen shots are absoultely monsters.

      • SporkParade

        Sorry to hear about your loss.

      • Gatita

        Terribly sorry for your loss. That is heartbreaking.

  • Dr Kitty

    Currently “only” on a feeding tube…
    However, maybe in 7 years when that could be a feeding tube, diapers or continence aids, PT, OT, mobility aids, special education, inhalers, recurrent infections, behavioural issues, sensory aids etc the mum won’t feel the same.

    Sometimes it is just too hard for people to accept their share of the responsibility for things like this.
    They remain in denial or shift blame elsewhere because their mind literally *cannot* accept the burden of guilt and shame that comes with accepting that their choices are largely the cause of their child’s suffering.
    The denial, the blame shifting and re-framing and inappropriate positivity- that is how they’re coping.

    Maybe they don’t have the skills or the resilience or the ability to cope in any other way, but that doesn’t make their coping mechanisms any less maladaptive.

  • Ash

    So for the mother who had a placental abruption at home…would she be willing to say “a labor and delivery at home is more important to me than brain damage?” Because that’s exactly what she’s saying here. “we are so glad we had him at home” WHY? By calling emergency medical services, you indicate that you ARE interested in medical care for your child…an out of hospital experience was WORTH IT? So she’s saying if she had the choice to go back in time, SHE’D DO THE SAME DAMN THING? People can have whatever priorities they want but that is fucking bizarre.

    • toni

      I guess she just doesn’t think the two are related? She’s convinced herself the outcome would have been the same even if she’d been in a hospital except she wouldn’t have had whatever benefits she thinks she got from having a homebirth (mostly aesthetic it seems to me but many of them believe the baby bonds better, has a less traumatic entrance etc. and that that is somehow as essential to well-being as resus equipment). So homebirth still comes out on top. If she does know and accept that his problems would have been hugely mitigated or avoided completely had she been in the hospital in the first place then she must be mentally deranged or just plain wicked. I cannot fathom it. It really shocks me how many women I see online (women I know and thought were normal for want of a better word) defending reckless midwifes and desperately trying to rebut the obvious fact that babies suffer when their parents reject mainstream obstetric care. It doesn’t surprise me that so many women are stupid, just that so many are stupid in the exact same way.

      • Daleth

        I think they have to just be in complete denial. They’ll hear all that crap about “these things happen in the hospital too” from their midwife, woo friends and woo websites. They had to believe that in order to choose homebirth, and when the homebirth devastates or kills their baby, they have to keep believing it or else they will be faced with the horrifying fact that their baby’s death or lifelong suffering is their fault.

        • toni

          I’m thinking the bottom will fall out soon. There are going to be so many cases like these and there will be some definitive study showing a huge increased risk that can’t be misinterpreted by the media or spun by HB advocates. flattery and romantic propaganda can only work so much and eventually it will just be the crazies clinging on to these ideas like it was 10 or 20 years ago. People will realise the leaders of this movement just plain old don’t give a shit about babies.

          • Daleth

            There’s already been a definitive study. I don’t know how you get much more definitive than looking at EVERY SINGLE BIRTH of a low-risk baby in the US–low risk objectively defined as a full-term vertex singleton weighing at least 2500g–over a 3-year period, totaling more than 10 million babies, and finding that home birth with a midwife was 4 times more likely to kill those babies than hospital birth.

            I’m talking about the Grunebaum study at Cornell, which Dr. Amy discussed–and provided a direct link to–here:
            http://www.skepticalob.com/2014/02/new-cornell-study-shows-homebirth-has-4x-higher-death-rate-than-comparable-risk-hospital-birth.html

          • toni

            but didn’t they come up with all kinds of spin and plausible (to some) excuses that the press went along with? putting the blame on hospitals for not integrating midwives like in Europe, saying the high CS rate, lack of autonomy in hospitals is scaring women away. You’re right though now I’m reading this it is pretty definitive and shows a dramatic difference. Not dramatic enough perhaps. sigh

          • Daleth

            Right–they spun it anyway, based on complete bullshit.

            I’ve seen people criticize the Grunebaum study on the grounds that it supposedly didn’t distinguish between planned home births with a midwife and unplanned births in taxi cabs, freebirths, etc. And that’s not just a lie, it’s an idiotically obvious lie–since any fool can glance at the chart (the second of two charts shown here: http://www.ajog.org/article/S0002-9378%2813%2901155-1/fulltext) and see that there are two sections for out-of-hospital births:

            1- HB attended by a midwife, and
            2- All other HB/OOH (those attended by “other,” i.e., anything from nobody to your husband to your taxi driver to your cat).

            In other words… uh, YES IT DID distinguish between HB with midwives and all other out-of-hospital births.

            I’ve also seen a twist on that critique: that the study used birth certificate data, which shows place of birth but not PLANNED place of birth, and supposedly that makes a difference such that HB appears more dangerous than it is. Not only is that a lie, it doesn’t make HB look more dangerous. The chart I just mentioned proves that the study DOES show planned place of birth: if you give birth at home WITH A MIDWIFE, you obviously planned to give birth at home. Who has a precipitous unplanned delivery at home AND just HAPPENS to have a midwife there at the time?!? Even assuming that ever happens, it certainly doesn’t happen enough to skew the results in a study that looked at 10.4 million births.

            So that’s the baldfaced lie–and then the only difference using “actual” rather than “planned” place of birth makes is that this study makes home birth look LESS dangerous, because this study can’t see which HOSPITAL births were planned and which ones were catastrophic home-birth transfers. Some of the babies who died in hospital died because their moms attempted a failed home birth. Most or all of them would not have died if mom had gone to the hospital early in labor instead of waiting for a catastrophe. So this study actually makes home birth look LESS dangerous than it really is–and yet it is still clearly four times more likely to kill than hospital birth. Not to mention god knows how much more likely to cause permanent brain damage.

            So apparently HB advocates are so waterlogged with the Krazy Kool-AID that they can fail to see a simple, five-line chart that proves their critique is a lie. They will spin ANYTHING and do whatever mental acrobatics they have to, in order to maintain their dogma. Definitive studies mean nothing to them.

          • yugaya

            I think Melissa Cheney ended up submitting some shitty paper about how evil medical complex is out to get them or something re this study. They even posted how doctors should not be the ones conducting any studies on homebirth because of their medicalized birth bias.

          • Daleth

            Because doctors cannot do math? Seriously. It is not that hard to count how many babies were born at each type of birth location, count how many died, and do the math. And there is no way to spin that.

            Morons.

          • Daleth

            As for hospitals not integrating midwives like in Europe, they do integrate midwives. There is a team of CNMs with whom you can deliver at my local hospital, and that is common.

            What hospitals don’t do is integrate FAKE midwives–that is, CPMs and other lay midwives. And they also don’t integrate people (even CNMs) who refuse to follow the hospital’s policies on what pregnancy complications require midwives to risk out a patient and send her along to the OBs for a hospital birth.

            So the message to midwives is, “If you want to be integrated into the American medical system, go to school to become a real midwife, and then follow the risk-out policies of the hospital or OB practice that hires you, so that their malpractice insurance will cover you. You can either have both–that is, a real education and respect for risk, plus integration into the medical system–or neither. You don’t get to cherry pick, or force people to hire you when you’re not qualified.”

          • Daleth

            Here’s another anecdote about the US medical system integrating midwives: a friend of mine with hospital phobia is planning to give birth at this birthing center:
            http://midwifecenter.org/
            This birthing center is what all non-hospital birthing centers should look like, and it’s what “integration” looks like:

            – Every one of their midwives is a CNM

            – Their midwives have admitting privileges and collaboration agreements with the OBs at the nearest university hospital

            – They carry malpractice insurance

            – They refer patients out to the nearest university hospital if they develop complications during pregnancy or labor (they transferred another friend of mine during her first childbirth)

            – Their CS rate is just over 13%, not the usual BS 1%-5% that birthing centers like to advertise. That tells me they really do transfer laboring women who need transfers.

            Here are the sources for the above:
            http://midwifecenter.org/midwives-nurse-practitioner/
            http://midwifecenter.org/about-2/faq/

          • yentavegan

            if the birthing center is not physically attached to a hospital..if transferring means getting in a car or waiting for an ambulance, if the hospital the mom transfers to has no records of her….this is a recipe for disaster… read the facebook page of Justice for Vylette Moon.

          • Daleth

            I agree more dangerous than birthing in a hospital. But I’m betting it’s a lot less than 1.5-2x as dangerous, which is what the Grunebaum study out of Cornell showed birthing-center births were: freestanding birth-center midwives had a 6.3/10,000 death rate, vs. 3.1/10,000 for hospital midwives and 5.4/10k for hospital MD’s (see the second chart, at the bottom: http://www.ajog.org/article/S0002-9378%2813%2901155-1/fulltext).

            That’s for all birth centers in America, some of which are just some CPM’s house, most of which employ mainly or exclusively CPMs. The one my two friends went to/are going to is basically as good as a non-hospital birthing center can get, so the excess risks there are presumably less than in the Grunebaum study, and probably much less.

            What happened to Vylette Moon and her mom should be a felony and I’m appalled to see it happened at an apparently legit birthing center (the Brooklyn Birthing Center). But I don’t see anything on their webpage as clear and strong as what’s on that Pittsburgh center’s page–the Pittsburgh one says basically if you develop certain complications you can continue to get prenatal care here but your birth will take place at XYZ hospital, where we have admitting privileges.

            In contrast, the Brooklyn one just says, “We assess each client’s risk status at regular intervals throughout the course of pregnancy. If a risk factor is identified, your midwife will talk with you about recommended hospital-based midwifery and physician practices.” It doesn’t say they WILL risk you out and it also doesn’t say they have admitting privileges anywhere. That waffling and vagueness tells me their attitude is probably more “trust birth”-ish than the Pittsburgh one.

          • Cobalt

            Not as safe as a hospital, but probably as safe as can be achieved outside of one.

          • Daleth

            Exactly.

  • Aurora

    OT: I’m considering medication for my 8-year-old son. He’s been diagnosed with generalized anxiety disorder and apraxia of speech. He gets OT and speech therapy at school and cognitive behavioral therapy. They are helping a lot but he still has panic attacks and sporadic episodes of violent/aggressive behavior so I think we’re at the point where we need to combine meds with CBT, at least for a while. The drugs used to treat GAD in children are SSRIs such as Prozac and Zoloft. Do any of you have any experience with using these drugs with your children? We are going for a psych consult but would love to hear from some sane parents as well since most message boards dealing with meds for children are stuffed with crazy bad advice. FYI, I’m a regular poster who is choosing to post this from a guest account for privacy reasons, so Amy if this is a problem feel free to delete.

    • KeeperOfTheBooks

      I don’t have anything concrete to offer, but wanted to wish you the best of luck in figuring out the ideal treatment plan for your son. I can only imagine *twitches violently* the sort of lunacy you could encounter on a lot of those boards…
      Have you tried essential oils? My second cousin’s kid’s best friend used them rather than those nasty, chemical-based drugs, and he graduated as valedictorian at Harvard! (/sarcasm, though I do hope that’s not necessary)
      *ducks to avoid thrown produce*
      In all seriousness, I wonder if the psychiatrist or one of your son’s therapists might know of a sane parent support group of some kind, whether online or locally?

      • Aurora

        That’s a good idea. I will ask. Problem is I’m in a deeply woo-infested part of the country. But the deep pockets of crazy tend to be among the parents of autistic kids so maybe I can avoid that since my son’s diagnosis is different.

        LOL’ing at oils and Harvard but also sighing because people in my area totally believe that shit.

    • Cobalt

      The meds affect different kids differently, so experience with specific medications is sometimes misleading. You have to see what works best for your specific kid.

      On medications generally, I will say: don’t be afraid to try it if it might help the kid’s quality of life. There’s a lot of “medication is a crutch for lazy parents” buzz, but that’s a load of crap. Just like formula and cesareans, meds can improve a child’s health and quality of life. You have to find what is going to work out best for your kid.

      As for choosing where to start or what to try first, talk to the doctor. They can give you the different side effect, risk and efficacy profiles for your child.

      • Aurora

        I’m completely okay with meds. Fuck that lazy parents meme. We’ve didn’t six years doing therapy, evals, etc. And it’s all helped. But it’s not enough. And I don’t want my son to be miserable if there’s a drug that will help. The big hill for me to climb is convincing my husband. He’s scared of meds. But I think he’s starting to see the need to do more.

        • An Actual Attorney

          I know this isn’t worth much, coming from an Internet stranger, and not exactly what you asked, but….
          I have crushing depression, have since I was at least 8. I’m pretty successful in my field. My life, and life for my whole family would have been much better if I could have been started on even partially effective medication as a kid. It would have also been different in unknowable ways, but I am quite sure better.

          • Medwife

            Wow, ditto. Impossible to say, of course, but as someone who waited until her late teens to have major depressive disorder recognized, I also wonder kind of wistfully what life would have been like with earlier diagnosis and treatment.

          • Aurora

            Thank you for sharing, I really appreciate your perspective.

          • Aurora

            Thank you for sharing, I’ve seen your posts for a long time and your opinion definitely counts.

        • Cobalt

          I was scared when meds were recommended for my son. Like, terrified. I’m actually kind of terrified with any meds that impact brain function or “feel” in any way, I was in my mid twenties before I would take ibuprofen for pain. And they wanted me to give my five year old amphetamines and antipsychotics. Every instinct I had screamed NO!

          But I did it, and it helped him. There were definite rough spots finding the right drug, the right dose, but the improvement for him was amazing. His life was better, safer, HAPPIER. Completely worth my getting over my fears, a million times over. My only regret is holding out when it was first discussed.

          Your experience may be completely different, of course, but I am so glad I went against my instinctive aversion to pharmaceutical treatment.

          • Aurora

            Thank you for sharing, this is exactly what I’m hoping for. A happier kid whose life is better and safer.

        • Squillo

          We went through the same thing with our son. You might try reminding your husband that medication isn’t an irrevocable decision. You can try it and see if it helps enough to make it worth whatever risks he’s concerned about.

          The black-box warning on some anti-depressants is related to a very, very small risk of increased suicidal ideation, and even that is still under debate. At eight, it should be possible to watch your son carefully enough to ensure his safety during the initial period of risk.

    • DelphiniumFalcon

      I’m not the parent of a kid on meds, but I am an adult that was a child on meds so I can give a slightly different perspective. I’ll give you a history of what I went through. Some things will be different for him and some will be the same.

      You’ve done everything the right way to make sure your son’s anxiety and aggression weren’t from unhealthy coping mechanisms and it sounds like he does well with CBT. It’s a wonderful intervention and the earlier the better. I use it all the time still.

      But like your son CBT and a good support network weren’t enough. Not from any failing on those parts but because part of the problem still wasn’t being treated.

      When my depression and anxiety took a firm hold when I was about nine I remember being miserable. I remember wanting to die and wondering how one would go about doing that. I scared myself so I didn’t tell my parents until many years later that I was having suicidal thoughts in the single digit ages.

      My mom saw in me what you see with your son that there’s progress being made but there’s still something insidious at work that hasn’t been addressed yet.

      Your son is a lot luckier than I was since my generation was kind of the tipping point in pediatric psych meds. There was a lot more hand wringing back then that giving meds to pediatric patients would permanently alter their brain chemistry, wouldn’t work, or the pervasive “children can’t have -insert mental disorder here-.”

      But they did work, even if my brain chemistry was altered it was already way off the deep end anyways, and as time went on it became extremely obvious children can have anxiety and depression disorders.

      I started on imipramine, tricyclic antipressant, when I was eleven. It worked really well but when I got I to middle school I didn’t want to take it anymore because I thought I was “fixed”. Middle school years were some of the most miserable of my life. My mom tried to help coax me back on meds but I wouldn’t have it. And she wasn’t going to sit on me and force them down my throat. She wasn’t even sure if meds were the right thing in the first place with all the contradicting information flying around.

      I finally got my head out of my rear in highschool and decided to try meds again. SSRIs were the drugs of choice by that time and it took a LONG time to find one that worked that was also approved for teenagers. Some were prescribed off label because nothing else worked. Zoloft was the best one but it made me overly tired. Prozac was the absolute worst. Put me into a suicidal funk where I almost actually went through with it. I have my sister to thank for saving my life.

      But finally I think it was celexa that did the job.

      It’s going to be hard and you’re going to watch some meds have pretty awful side effects. But I wish with everything I have I hadn’t been so stubborn and stayed on the imipramine. Life would have been so much better. I wouldn’t have been so fearful, stressed, and frankly twitchy.

      Your son lives in a different age now though which is a lot more accepting of medication for childhood mental disorders. Hopefully your son won’t give you the trouble l gave my mom. A lot of my push back had to do with people making fun of me for having to take pills or that I was crazy.

      Just watch him carefully. Watch him take his pills for a while so he gets in good habits. Watch for if he withdraws more because he could be having a bad reaction like I did with prozac. Most of all be open and never chastise him for how he feels regarding meds. If you can keep good communication open, you’ll find the medications that help him the most. Sometimes kids are scared to say when something isn’t working so make sure he knows it’s okay to say when one isn’t. Especially if he’s susceptible to SSRI burn out like I am. I can do about two to five years on an SSRI before they stop working regardless of the dose. Atypical antidepressants and SNRIs I haven’t had the same issues with.

      And don’t be afraid to try a combination of drugs. I take Welbutrin and Effexor now which is a rather odd combination but it’s the only one that works. The Effexor alone is great for my anxiety but doesn’t control the depression well. Welbutrin alone does well for my depression but very little or even exacerbates my anxiety. Together they keep both in check and keep me a functioning human being.

      Most of all make sure he knows he’s not broken. I agonized over that a lot because my Grandmother had my mom convinced that it was all my mom’s fault I was like this. When she wasnt accusing my dad of molesting me as a child and that’s why I was “so messed up.” I’m pretty sure I know who the messed up one is.

      I finally accepted that this was a fundamental difference in how my brain works when we found some medical records of my great-great-great grandfather who was in the hospital during the Civil War for some kind of mental issue they couldn’t identify back then. We knew what it was right away, especially when we found out he had episode his entire life. He only saw his son who was born during the war once as a baby but his son inherited the same depressive episodes. So it wasn’t a cycle of abuse. In the end you can draw a straight line up my mom’s dad’s side of the family tree through the male line back to him. And it all spreads from that point. Every single one of my mom’s brothers and sisters have depression, OCD, anxiety, or a combination. Almost all my cousins from that side have it too. A couple of autistics and asperger’s have popped up too. My mom, grandpa, and I finding that finally put our minds at peace. We didn’t bring this on ourselves. He didn’t screw mom up and she didn’t screw me up. It was a weight that had been pressing down on our family for generations and was finally lifted.

      We have something physically different about our brains. Just like diabetics have something that effects their pancreas. We don’t tell diabetics to think their way out of insufficient insulin. You shouldn’t tell a person with a mental condition to think their way out of their symptoms either. It does just as much good as it does the diabetic.

      The sooner he learns to love and accept himself as he is and that he did nothing wrong, he just needs medicine to make his brain work like others, the happier he’ll be.

      • Aurora

        This is really wonderful, thank you so much for sharing your story. We also have a history of anxiety on both sides of our family and it really is a brain imbalance. I don’t feel moralistic about it but I do want to solve the problem both for his sake and mine (being on the receiving end of a meltdown is shit, let me tell you).

        What makes this so painful is that my son is gifted in many ways. Not intellectually gifted, though he’s bright, but emotionally insightful and empathetic in ways most kids his age aren’t. But the panic hits out of nowhere and suddenly he’s kicking and punching like a wild animal. I just want him to be happy and well and to fulfill his potential so he can be his quirky, sweet self without fear making him (and the people around him) miserable and stunting his ability to learn and grow.

    • Amazed

      I can’t say I know anything of therapy and treatment plans. I just wanted to wish you and your family luck in finding out the best possible one!

      • Aurora

        Thank you! The support truly helps. It can be really isolating when you’re dealing with a child with emotional/mental issues.

    • Ellen

      I sympathize with what you and your son are going through. Around that age, the ADHD that they thought he had, began to change, and had all of the symptoms you describe. He was seeing a psychiatrist and a neurologist, and was on the medications that you mention, but nothing seemed to help. Life was so hard for him, and for all our family. Turns out, he actually was Autism Spectrum Disorder (Asperger Syndrome).

      We found a great child psychiatrist, and found a great school that specialized in kids with developmental problems, and life became so much better for him (and for the whole family; this affects the whole family, when a child is in such distress).

      He is 24 years old now, and has problems with things like keeping a job, but he is a kind person, has a great sense of humor, and is really enjoying life.

      I hope your son and your family will find your way through this hard time, and have a much better future.

      Ellen

  • Kesiana

    Woooow. To butcher a Night Vale slogan, “homebirth doesn’t kill babies–oxygen deprivation and subsequent organ damage does.”

    I wonder, how do these types feel when they end up permanently disabled after a birth gone wrong?

    • Cobalt

      If only the risks could be transferred from the baby to the mother!

      • SporkParade

        The good news is that there is a way to transfer nearly all the risks of birth from the baby to the mother. The bad news is, well, good luck convincing these women that maternal request C-section is the way to go…

      • yugaya

        I doubt these same women would so eagerly go for birth experience over safety if the numbers were reversed. And it would be more visible too if the crunchy homebirth mammas at the playground were the ones who suffered home birth damage instead of their children.

  • Jennifer

    The mom with the spastic quad son went on to have her next baby unassisted at over 42 weeks. Luckily, baby seems fine. I just can’t understand taking that kind of risk again.

  • Beatrix S.L

    What a bunch of delusional nutcases. My younger brother was born prematurely (6 months) for no apparent reason, my mom was at the hospital in good time where they tried unsuccessfully to delay the birth, he is partially blind and has some cognitive delays as a result. And I recently found out my mother has spent the last 20+ years blaming herself for it, her body for “failing” him, even though she did nothing wrong. Meanwhile these fuckwits…

  • CanDoc

    I am beyond horrified. This isn’t rationalization, this is a brainwashed cult that sacrifices children on an alter made of golden vaginas. Cesarean delivery is the antichrist to be eschewed and cast down. And yet, and yet, and yet… we keep letting it go on, and on, and on.
    And okay, here’s Machiavellian me: whose taxes pay the hundreds of thousands of dollars required to care for these children, now a medical burden, who would otherwise be able to have much more able lives? Not those moms, that’s for sure.

    • Who?

      Or the midwives and others who advise them, if they are to be believed in their assertions that they make practically no money out of their activities, which means they pay practically no taxes.

    • SporkParade

      I suspect that this is why the Israeli national health system will pay for maternal request C-section, but will *not* pay for homebirth (and will insist that you be a good homebirth candidate and have two CNMs attending with at least 3 years each of hospital experience).

      • AFAIK, none of the health funds offer a “homebirth option”. Women who want to deliver in their homes go completely private. Fortunately, the demand is very small, and the number of CNMs who are willing to do homebirths is also miniscule [I know most of them because they used to be on the staff of Misgav Ladach, where I worked]. No midwives except CNMs are licensed in Israel*. However, also AFAIK, none of the CNMs works as a team with another CNM. They prefer the assistant to be a registered nurse with experience in a newborn nursery or NICU. There aren’t many of these, either, who want to attend homebirths.

        *There is one, and possibly a second, unlicensed midwife doing home deliveries “under the radar” of the Ministry of Health. They will probably continue to do so as long as no one reports them, but it is a criminal offense to do so.

        • Daleth

          A team of a CNM plus a NICU nurse seems like the best possible setup if you’re going to insist on a home birth. It solves one of the big problems with home births: not having enough medically skilled attendants to help with BOTH patients.

          Still not a choice I would make, but clearly the best setup for home birth.

          • Although staff is crucial, it’s not the only thing. Even the best trained staff is severely hampered in the home by the lack of specialized equipment and supplies. There’s a limit to how much can be shlepped into a home, and remember that bedrooms throughout Europe and in Israel are small; basically only sleeping cubicles. Still, I suppose it’s better than nothing.

            In a population of approx. 8 million, I don’t think there are more than several hundred homebirths in Israel every year. When you can go to any hospital you choose for free, and also get a cash grant, while homebirth means serious $$$, only the most fanatic are even interested in it.

            Israelis in general are attracted by technology, not opposed to it. I had to frequently dissuade women from insisting on unnecessary testing and the use of just about every “intervention” they’d ever read about.

  • Allie P

    How rare is it to fail to detect lung, liver, heart, AND kidney congenital defects with regular prenatal ultrasounds? This still seems that something standard prenatal care would have detected and, if possible, prepared for.

    • CanDoc

      I suspect what they meant was lung, liver, heart and renal (kidney) FAILURE rather than congenital defects. The former are a result of severe oxygen deprivation, the latter would be part of a genetic syndrome or condition. The former would be more common, especially if prenatal investigations were all normal – renal and cardiac abnormalities are commonly identified on prenatal ultrasounds.

      • Who?

        So this question may outrage some but I have to ask it: if a baby was found, during the pregnancy, to have such disastrous defects, would the doctors and parents make a care plan for the delivery and treatment of the baby?

        Might the parents decide, given the prognosis of very poor quality of life, that the baby be let go quietly in their arms not aggressively treated? Or they might decide that all measures should be taken, knowing the best possible outcome would be the very significant health challenges and development limitations ahead?

        My point, which I’ve taken some time to make, is that if you don’t know, you have to try, even if the parents would have made a different choice with full information. How is less information better for anyone?

        • Susan

          I think this is a great point and something that frustrates me about people who act like prenatal diagnosis is somehow synonymous with being pro abortion. In fact, I often think some people who decline it based on fear that they might become tempted somehow to terminate if they knew their baby had a serious anomaly.
          Certainly some people do decide to terminate pregnancies that have serious problems. But what gets missed is that, for instance, people in smaller towns/cities get the opportunity to transfer to a place that might have lifesaving state of the art care to address a baby’s problems. Or, maybe the parents get time to adjust and learn about a diagnosis. Simply knowing your baby is going to have a cleft lip or palate ahead of time can help make the birth less of a shock and get time to learn about what to expect, feeding issues and hopefully a plan for surgeries. In other cases, perhaps yes, they get time to decide what resuscitation measures they would be most comfortable with. Parents don’t have a right to say “no resus ” if a baby is perfectly normal but they definitely are the first decision makers when there really are huge quality of life issues. I have even seen prenatal diagnosis where the parents know there is an anomaly incompatible with life and not only choose to carry to term but choose elective C/S because it will allow for a short but very meaningful life. This is a very complex subject.
          I think less information for some people is more magical thinking really.

          • Allie P

            I’m one of those who thinks knowledge is power under any circumstances and I got all the advanced testing and prenatal imaging. I would want to know and be able to get prepared in advance if I found out I was going to have a child with special needs. A friend had a child born with a cleft palate and it was a surprise. She needed special bottles to feed the baby but these bottles were backordered and it was weeks before she had more than one, which of course needed to be sterilized at every feeding and put a remarkable amount of strain on her. Something so simple became a significant quality of life issue. And that was a condition that was easily fixed later on with surgery. There’s a lot of emotional and physical preparation that can be done if the child will be born with a more severe or permanent disability.

        • AL

          It’s quite possible IF it’s true that he had congenital abnormalities (although a lot of these women didn’t really seem well versed in medical terminology, so it’s quite possible that they were to interchange congenital and multiple organ failure as the same thing) that she didn’t have prenatal care. She seemed like a free birther type.

          If you go over to Facebook and check out their attempt to school those in the sciences and medical fields on how to read statistics, you’d think you were talking to a 2nd grader.

        • Box of Salt

          Who? “Might the parents decide, given the prognosis of very poor quality of
          life, that the baby be let go quietly in their arms not aggressively
          treated?”

          If this were the case, wouldn’t the parents just let the baby go quietly, without the attempts to get the baby to respond, and then transfer of care to a medical team?

          Your scenario does not fit with what was posted about #7 Baby Boy M.

          • Who?

            Sorry, my question was more a hypothetical-if prenatal testing reveals existing damage, can you choose how to manage that on delivery? I agree, in that scenario, with such a tragic prognosis, sparing the child the full on treatment at birth would be my choice.

          • TsuDhoNimh

            Yes, the parents can (and will be encouraged to) discuss the options with the medical staff.

            If they opt for “no resuscitation, comfort care only” because of severe defects, that’s what happens.

        • Cobalt

          I can’t see how being deliberately unprepared and uninformed is ever helpful in a medical situation. If you know, you can have a plan. Being shocked in the delivery room, with no time to contemplate, can’t be the better option.

          And some babies are born with “no resus” plans, or a plan to let the baby “declare itself” before determining if only comfort measures will be taken. I usually hear or read about it in terms of very premature babies, but I imagine major birth defects would get the same considerations. It’s a tragedy that it ever is a choice a parent has to make, but it happens.

  • attitude devant

    At my daughter’s preschool there was a little boy whose mother would walk over to get him every afternoon, pushing his older sister, who had the worst spastic quadriplegia I had ever seen, in a special chair. Mom approached me at pickup time one day saying that she had heard I was an Obstetrican. “That’s really cool!” she said. Indeed it is, I agreed. “I’m going to be a midwife after I raise my kids,” she volunteered. “I LOVE my midwife! She was so patient during my labors!” Yep, both home births! And while I will be the first to admit that HIE happens in hospital too, her daughter’s profound disability was not exactly a ringing endorsement of her midwife. But she still thought it was GREAT.

    • araikwao

      The cognitive backflips and contortionism required to remain wedded to one’s beliefs is truly astonishing.

      • Ash

        It’s likely that the mother in question has no idea that a prolonged labor at home could be a contributing risk factor for cp

    • Azuran

      Her comment about how she will become a midwife after she is done raising her kids shows how little she really is facing the truth of the situation. She will never be done raising that spastic kid. She will have to take care of her until one of them dies.

      • Liz Leyden

        I’ve spent a good part of my career caring for disabled adults, including a few with spastic CP. One lives on his own, with live-in and live-out caregivers. One splits her time between her parents’ house and adult foster care. A third still lives with his parents.

    • Mel

      The part I can’t wrap my head around – and maybe the parents’ can’t if they’ve never experienced it – is the fucking pain. I’m a lucky duck who was born in the hospital prematurely. I ended up with mild spastic CP that mainly affects my legs. The thought of spastic quadriplegia is causing me to rub my arms, back and legs from shared imaginary cramping and aching. I can walk and – usually- find a yoga position or three that will eventually ease the pain….but that little girl won’t.

      • Smoochagator

        Oh, that is terrible 🙁 I had no idea.

        ETA: Meaning, I had no idea that spastic CP could be so painful. Thank you for making that point, it’s very important.

  • Spamamander

    No fucking words (pardon the French). I have a child who is developmentally disabled through no fault of my own, yet I still have guilt now and again, even after 19 years. These women are fucking PROUD of causing their children to have significant impairment because they managed to shove them through their vagina?!

    • Kelly

      My mom too. My brother was born that way and wondered for many years if using the microwave had made him that way. These women are disgusting. Why would you be happy that you caused all that suffering.

  • anh

    My baby is profoundly injured but woot! my vag is perfect. And it’s all about the vag, right? Ugh

    • I sometimes wonder if they think the children will eventually “grow out of it” and won’t be totally dependent when they are no longer babies but 100 kg adults who have to be fed, toileted, etc. Or what will happen to these profoundly disabled persons when their parents are no longer physically capable of caring for them, or die?

  • mostlyclueless

    Of all the horrifying things said by home birth moms, I think these two may tie for the “most horrifying” award.

    Only peripherally related, for a long time I have been puzzled that home birth outcomes aren’t even worse than they are, especially in countries like the Netherlands and Canada where the relative perinatal mortality isn’t as dramatically increased as it is in the US.

    I wonder, though, what would happen if researchers looked at rates of HIE instead of perinatal mortality in those countries. Maybe home birthers have it “right” when they say that the hospital is just a few minutes away — in that the hospital can probably keep a very compromised baby alive, due to extraordinary medical advances — but it still can’t give a compromised baby a normal life.

    I don’t know, I’m not a clinician, I don’t see these things happening in front of me like so many physicians and nurses do. But I suspect the HIE numbers are far more damning than perinatal mortality numbers.

    • Cobalt

      Brain damage risk is 17x higher at home than in hospitals.

      The homebirth population, while higher risk than they claim to be, is still lower risk than the US as a whole. The mothers in the MANA study, for example, were 92% white and the majority can afford the thousands up front, out of pocket, to hire a CPM. There are also more multips in the homebirth group.

      Edited to fix outrageous spelling error. And again for grammar.

      • Medwife

        And MANA didn’t keep track of brain injury. It would be difficult (although not impossible- they should freaking go through the effort of trying) because some cases of brain injury aren’t identified for years.

        • Azuran

          And they would probably blame it on vaccine shedding or something.

      • mostlyclueless

        Yes, I’ve seen that number (and also 10x higher) but I think both studies were in the US and IIRC one was just an abstract, not a full peer-reviewed manuscript (not saying I doubt the number, just not as strong evidence that way) — I think it would be good to see HIE numbers at home birth vs hospital in the countries that claim no or almost no increased risk of perinatal mortality out of hospital.

  • Cobalt

    When proving you have a stretchy vagina wins out over providing the preventative and/or emergency care your baby very obviously needed, I just can’t even…

    • yugaya

      “When proving you have a stretchy vagina wins out over providing the
      preventative and/or emergency care your baby very obviously needed”

      She be like:

      • Kq

        Oh my god I almost choked to death just now.

        • yugaya

          It’s a perfect illustration of the mindset that enables a woman to brag about her vaginal victories over an injured baby, but I find it creepy beyond words. I think I’ll remove it or put it on a link eventually.

          • MLE

            Hilarious, seriously. Wow the imaginations that are out there!

        • jenny

          Maybe I’m immature, but that gets me giggling every time I scroll past it. It’s like bye felicia with labia majora.

      • Cobalt

        Who comes up with this stuff?!?!

        How and why does this exist?!?!

        Wow. Just wow.

        • Houston Mom

          I am thinking it might be from one of the love your lady parts in all their variety type websites.

          • Cobalt

            Hey, I’m all for loving your body, including your lady parts. But if mine did that, I would see a surgeon, post haste.

          • Houston Mom

            Even if you could fly?

          • Cobalt

            Especially if I could fly.

          • DelphiniumFalcon

            Man, some X-Men have -the- worse mutations.

          • Roadstergal

            The XX-Women. This stuff writes itself.

        • The Bofa on the Sofa

          Personally, I don’t even get it. Is that supposed to be a good thing or something? Vaginal lips so big that you can use them as wings?

          Maybe it’s a guy problem here, but I am really confused.

          • Siri Dennis

            I only drive a BMW to compensate for my tiny labia. 🙁

          • The Bofa on the Sofa

            I only drive a BMW to compensate for my tiny labia. 🙁

            See, this is what it actually reminds me of – guys who think that they are all about their penis. I mean, this could just as well be guy-with-a-hugungous-penis graffiti on the walls of ancient Roman bathhouses. Or the wall of the dorm bathroom.

            Either way, I never thought it something to strive to emulate.

      • Who?

        That is downright disturbing.

      • demodocus

        ew ew ew ew ew ew ew ew

      • Susan

        LOL that didn’t show up for me right away. Should set it to “On the wings of Love”…
        Or a labioplasty site?

      • Liz Leyden

        “I believe I can fly…..”

  • Bertrande

    I’m permanently disabled due to homebirth. I will live the rest of my life struggling with my health. I’m 34. Birth is brutal. It’s not supposed to be a magical experience for you. Most of my friends are disabled, too. We are proud to be disabled. But it’s pretty fucking selfish of these mothers. They probably do have diagnosable narcissistic personality disorder. It’s beyond the pale.

    • DelphiniumFalcon

      I’m sorry you have to deal with that. I’m glad that you have a positive outlook on it though. Not everyone could look at those disabilities and be proud instead of bitter and wanting to blame everyone else.

      I’m also glad to see you’re 34! I hope it’s possible for your health to improve in the future too. I know it’s not always possible but maybe something will come along to make the symptoms more manageable.

    • Mel

      Yeah, it’s funny how those of us who had less than magical birth experiences don’t feel compelled to wax poetic about our brain damage was totes worth it.

      What I can’t get over – at all – is the lack of understanding the parents of these children have for the physical and mental pain the kiddos will get to undergo thanks to the parent’s choices.

      I have a much milder form of CP than the babies described and it was due to premature birth. For me, most days are good. I can walk pretty far and my CP isn’t particularly noticeable unless you have a PT background or have CP yourself.

      But not everyday is good. I went for a walk yesterday on a nice, ADA-designed bike path. There was a divot at one point and I stepped wrong. I pulled the hell out of a hip flexor 3 miles from home and less than a mile from my car. I stretched. I hobbled. I stretched some more. I eventually limped a 0.25 miles to the nearest street and called my husband who picked me up. My leg is fucked up. Walking hurts. I have to use the “not injured leg only” to go up steps. If I’m lucky, I’ll be able to squat without pain in 2-3 weeks. I get to set aside 30-45 minutes a day for stretching. Motrin is my new pocket drug. With luck, I’ll be able to prevent other muscles – yes, I am talking to you, soleus and gastrocnemius – from taking this imbalance as a sign to act up.

      Remember, I’m lucky. I’ve got really mild spastic CP. The thought of spastic quadriplegia is making me rub my arms and legs in sympathy for the unending muscle cramps….

      • Bertrande

        Yes one of my best friends and colleagues has CP so I am learning more about it these days. I have neurological hearing loss among other issues. It causes me physical pain to have to hear too much. It’s been very hard to find a job that I can advance in, because I cannot use the phones. It’s convenient that a mother can choose to spurn medical technology, but the children who are disabled due to her spurning that technology don’t have that option. We rely on and truly understand the effectiveness of medical science and dont have the luxury to “debate” that. I will need expensive medical treatment for the rest of my life due to the idea some have that medical science is bullshit. So….ironic, I guess.

        • Mel

          I like technology. I like medical technology. I plan on letting my future offspring have the same damn advantages that I’ve had.

          My twin is profoundly deaf (her cochlea has a few working cells in human speech range, but not that many) and has mild hypotonic (floppy instead of spastic) CP. I’m amazed how far hearing aid technology has come in the past 30 years. Sis can differentiate male and female speech with her back turned to the speaker now; back when we were kids, picking up speech behind her was a pipe dream. Sis is a teacher of the deaf at a residential school. She likes it and is really good at. Sis kept our family on the cutting edge of VOIP since phones don’t work for her – and we’ve had WAY too much fun with robocalls for her.

          My mom used all the medical technology at hand when we were born to save both of us – and she still occasionally struggles with guilt that she couldn’t carry us to term. (Although, as Sis and I point out, carrying us to term would have killed both of us. We had twin-to-twin transfusion syndrome and each of our cardiovascular systems were at the point of collapse when we were born.) If she had believed in homebirthing, Sis would have died in utero because she was transverse and bleeding out through my placenta after I was delivered. I may have survived for a while, but my APGAR scores weren’t great. And my lungs collapsed at 48 and 86 hours…so there’s that.

          Plus, now she gets guilt sometimes that she couldn’t breastfeed us. To that, I look at her and remind her that we’ve turned out pretty good on formula.

          • Bertrande

            A good friend of mine recently gave birth to twins who had twin to twin transfusion happen. It was pretty harrowing, but the girls are healthy now due to medical technology. It is amazing what doctors are capable of doing these days. She really needed constant medical monitoring. I cannot imagine how awful things would have gotten if she hadn’t had that kind of treatment and care during and after her pregnancy and had a homebirth. A homebirth would have killed the babies and possibly her, too.

  • DelphiniumFalcon

    Hey guys! I got to give birth at home! AND I didn’t tear! Isn’t that awesome?!

    Oh yeah the baby is probably totally brain dead, BUT LOOK WHAT I DID!

    But they put me in the ambulance naked. Totally not cool. 🙁

    What. The. Fuck.

  • Susan

    The “I didn’t tear” after the long list of critical and serious problems the baby endured. Really? Really????

    • fiftyfifty1

      Yep, because in the parallel universe that is NCB, not tearing is “proof” that mother is a natural Birth Goddess who did everything right, not like those women who tear who must be sexually uptight and hysterical. And if you are a Birth Goddess, then what happened to your baby can’t be your fault.

    • Allie P

      Honestly, I’d wear a mesh for the rest of my life to save my baby’s brain.

      • Daleth

        I’d get 10 c-sections in a row. Basically as soon as I googled “4th-degree tear,” I was like, GET ME A C-SECTION, STAT!

  • Kelly

    I can’t stand all the exclamation points in talking about a child who has HIE. These are severe disabilities. When we talk about my brother’s life, we realized that he had to endure so many physical discomforts and pain throughout his life. He could not communicate with us about what was wrong and sometimes we did not realize what was wrong until it got bad. They are glad that they had home births and their children are the ones who are taking the brunt of the narcissism. This makes me sick. Also, I feel like having a child with severe disabilities gives them the attention they so want if they would not change a thing about how their children were born.

    • fiftyfifty1

      “Also, I feel like having a child with severe disabilities gives them the attention they so want if they would not change a thing about how their children were born.”

      Yep, they go from Warrior Mother to Saint Mother.

      • DelphiniumFalcon

        I definitely think you’re right on the Saint Mama thing.

        Tripping across a few blogs of mothers with children that have more difficult to manage ASD children I see a difference between the ones that really are blogging to help their children be understood and the narcissists.

        The ones that really want to help their children post things like, “How to help a person on the ASD during a melt down”, “I wish others could understand and love my son/daughter like I do”, ” Today was hard. It hasn’t been a good day for either of us. I don’t know how to help him/her right now.”

        While the other blogs are:

        “How I Gave My Son Autism”, ” Autism, PTSD, and Me”, “Becoming a Warrior Mom”, ” My loss of a normal son/daughter.”

        Really, some of the latter type blogs have made me recoil in horror in how much they’ve made their child’s disability about them and their journey. What about their child’s journey? Their difficulties in trying to live up to expectations they never can for these “Warrior Mothers?” I sometimes wonder if their symptoms would improve if these mothers would take a minute and focus on what their child really needs instead of what these mothers need/want from their children and will keep trying to -make- them fit their mold.

        • Fool on the Hill

          I don’t know. I think there is a gray area. I have a profoundly disabled child (born by c-section due to breech presentation.) and I do write a blog about her/our life with her. I write a lot about her, but I also write a lot about what it is like for me/for us to live with, care for and love her. Early on I got a lot of “helpful advice” from people along the lines of “you should martyr yourself to your child and be happy to do it.” Not helpful. My child is non verbal, non ambulatory, incontinent, tube fed, has behavior issues (mostly screaming) etc. She’s six. At one point she had a fatal diagnosis, but that was retracted and we are back in the undiagnosed category. Caring for her is very hard. And very wearying. And there is no light at the end of the tunnel. I have typically developing children too and when they are in a difficult phase I just tell myself. “This isn’t forever. He/she will grow out of this.” That isn’t the case for my disabled child. If I have any hope of surviving this very difficult situation it rests on me being able to acknowledge and deal with how her disabilities effect not just her, but me, my husband, and my other children. As I have told people who criticized me for having negative feelings about this struggle (always people with healthy/typically developing children) “I count too. I have needs too. I have feelings too. This has wrecked my life too.” It isn’t selfish or narcissistic. I think the idea that mothers of disabled children should be martyrs to their disabled children is just another way of enslaving mothers, not unlike the way Dr. Amy writes about attachment parenting. Also, I write about what it is like for me, for us, to go through this journey with our disabled daughter specifically so people who have been blessed not to be in this situation can have some inkling what it is really like. It’s much harder than I ever imagined it would be. There is a whole lot of lack of compassion for parents of very disabled children. Family member are rude, people turn away and abandon you, you ask for help and are refused. It’s all kind of unbelievable. So the Autism, PTSD and Me type blog? I get it. And the mother who tried to kill herself and her autistic daughter and is now spending most of the rest of her life in jail? I don’t condemn her. I don’t condone what she did, but I realize that the reason she got to the point she did in caring for her daughter (she had been a major advocate and voice for her daughter previously) is because families caring for the disabled receive little to no support from anyone…the state, the feds, the healthcare system, churches, family, friends, the community. I think it’s because a whole lot of people believe we should martyr ourselves. Well, I don’t. Because I count too. Just as much as my daughter. And the more I care for myself and work through and voice my feelings, the better able I am to care for her. And I care for her amazingly well by the way. I taught her to communicate with flashcards, to read, to do math, I work with her therapies, I give her enormous amounts of affection, I make sure she gets to do fun things, I take her continually advocate for her and look for new therapies, treatments, etc. to make her life as good as it can possibilty be, I try to make her life as similar to any other six year old’s life as I possibility can. I’m a damn fine mother, to her and my other children, but I count too. My experience counts too. They aren’t mutually exclusive. Now, as for these homebirth./UC nutjobs? I don’t get it. Having a profoundly disabled child and knowing first hand how terrible it is for the child and the family of the child, I don’t understand why anyone would ever take the slightest risk with their child’s health and well being. My disabled child was my first, and my second and third children were born by repeat c section, even though I was a great candidate for VBAC because I will always shoulder the greater risk for myself with an ERCS than shunt the greater risk off to my child in VBAC.

          • DelphiniumFalcon

            Sorry I should clarify a bit on some of the issues because you’re right on your points.

            The biggest thing I see with the ones I mentioned in the second example were that their entire blog is that. The kid is more of a prop of “See how much I sacrifice? Worship me!” instead of, well, their child. I don’t see a lot of posts about their child, just how much like sucks for -them- unless the child’s issue makes for a better story.

            You definitely don’t have to be a martyr and there will be a lot of venting posts. Explanations on why you don’t like the whole Indigo child stuff or certain awareness days because it feels like lip service. That’s healthy and human. You have needs that need to be met and having a disabled children doesn’t mean you’re suddenly devoid of those needs.

            From your own post the emphasis, despite talking about your experiences, is not on how it hurts you so much and you need the attention and validation. It’s experience from the first hand account of living it. That makes sense. The days you wonder if you can keep doing this and what are you going to do for this child when you feel you have nothing left is only human. What will do do for this child when you’re too old to care for them? Natural fear nearly all parents with disable children have. I don’t see you wailing about how life is unfair and about how much this is so awful for you. You do talk about it, but it’s a part of a whole and not the whole itself.

            A lot of the blogs also give me the feeling of these mothers resenting their children. Which is also a human reaction. But they ruminate in it and when someone says to seek out help and give resources for that help they usually tell the person to mind their own business.

            It isn’t easy and you should be able to talk about the negative. But some.of ways I’ve seen it phrased were “I don’t love my child”, ” my child isn’t cute,” “I hate when he makes his stupid noises,” “I have no life because of him and I resent him” as reoccurring topics. That’s when I start to recoil.

            I don’t know you but from your post you don’t seem to resent your child. You worry, you admit it’s stressful, and you wonder “Why me?” All natural reactions because you didn’t get what 99% of the rest of the world gets when they have a kid. But from your writings, I see you love your children even when it’s difficult and even when you want to just give up. That’s the difference I see. I see you love them even when it’s hard.

            Edit: You’re also a lot more involved in helping your daughter overcome what she can and helping to mitigate what you can’t. You spend a lot of time with her to do what you can even when you’re frustrated. A lot of the other blogs don’t seem interested in helping their child. Just sitting and moping and going “Why me?!” and trying to force their disabled children into behaviors they can’t realistically do. That just seems needlessly cruel. Your description doesn’t sound anything like that. Your show attention and understanding that she has limits but you’re going to help her try to expand those limits one step at a time. That shows your love and more of what I see in the former blogs. You do sound like a good mother that was dealt a difficult hand. But you haven’t chosen to wallow in it and use it as a way to focus on you and only you.

          • Fool on the Hill

            Thank you for this. Brings tears to my eyes. To be heard and understood.

          • DelphiniumFalcon

            It sounds like you do good work with your daughter and you’re doing the best you can while also taking care of yourself. You can’t help her if you can’t help.yourself. You also have your other children who need your love and its a precarious balancing act.

            It’s not one I’ve experienced first hand but I have a developmentally delayed cousin who’s in her twenties but is developmentally around the age of a nine hear old at most. Still more advanced than others but I still remember back when she was around thirteen my uncle and her stepmother agonizing on having to some day talk to her younger brother that he may have to be the one that’s responsible for her when they’re gone. He was I think about ten or eleven then. That’s gotta be one of the last topics anyone ever wants to bring up with their child and then knowing there’s really never an appropriate age to bring that up but you still have to do it.

            You have a unique set of challenges and no one makes a parenting book for these circumstances and how would they? So people like you do need to be heard. Both the good and the bad. And especially the worst. If it’s not talked about then it doesn’t get better.

            But I’d definitely want to hear more from parents like you than I would the ones turning it into their ego ride. Just the normal parent like every other parent that has an abnormal future. Not a Warrior Mom out to change the world and redefine all our notions in one fell swoop and demand the glory and praise for being the hero. Just a mom saying “Here’s my story, even the parts you will judge me for. Know how these struggles affect the entire family. Know how to help us” And that’s commendable.

          • Charybdis

            My brother and I are a year and 6 days apart in age, he is the elder sibling. He also has Asperger’s. He has only been diagnosed as such for 10-12 years, Mainly because 47 years ago there was not the knowledge about the autism spectrum that there is now. It was a stone bitch growing up with him…never knowing what was going to set him off on a tantrum or meltdown and always having to be the one who got the short end of the stick because I was the one who could be rational and reasoned with. I really couldn’t have friends over very often and a lot of times my wants/needs/plans were obviously secondary to managing his “quirks”. I have also known since I was fairly young that I would have to be responsible for his affairs after our parents are dead. They have done all they can to make it as easy as possible, their estate is set up. In a trust. They are the trustees until one of them dies, then I move up to a trustee and another family member moves up when the second one dies.

            I intensely dislike those people who constantly state that their autistic spectrum child is ALWAYS considered a “blessing”. And that everything is ALWAYS wonderful and that they are so lucky and blessed to have the child. Are there rewarding times? Sure. Is it hard work? Abso-fucking-lutely. Can it be frustrating and exhausting enough to make you want to run with scissors on a daily basis? You bet your sweet bippy. But if you start to try and acknowledge the unpleasant, ugly, bitter and negative side of that life, you are immediately labeled a heartless monster. God forbid you try and vent some frustrations or look for support for the way living in that situation can wear you down.

          • The Computer Ate My Nym

            It was a stone bitch growing up with him…never knowing what was going to set him off on a tantrum or meltdown…

            I have asperger’s and the creepy thing is that this is exactly how I perceive neurotypicals: I’m just never sure if something I say will give offense or not. Conversely, it took me a ridiculously long time to realize that some things that bothered me didn’t bother neurotypicals and that people that did them weren’t being deliberately provoking. (For example, a cappella singing sounds awful to me. Note: not bad a cappella singing, not loud a cappella singing, just somehow words sung without music creep me out. I have no good explanation but I was literally in my 30s before I realized that some people actually like that sound.)

            This is not meant as a criticism of your comment or feelings and I hope it doesn’t come out that way. I just found it strange and kind of interesting how things could be perceived so differently. And, I hope, helpful to you.

          • Charybdis

            I didn’t take it as a criticism at all. I think it is the intensity of the reactions that is the most perplexing to a neurotypical. For example, my brother would only eat peanut butter and butter sandwiches cut diagonally into triangles. My dad made him one one time and forgot the butter and cut it into rectangles. That set off a near nuclear meltdown, complete with wrist biting, hand flapping and grimacing. He would not accept adding butter to the sandwich afterwards, oh NO. A completely new sandwich had to be made, supervised by my brother after he regained some semblance of control, 15 minutes or so later. I was THRILLED when McDonald’s came out with chicken nuggets, because that meant we could occasionally eat where I wanted instead of always having to go where he wanted.

            I understand people have things that bother them, nails on chalkboards, tags on clothes, food textures, punk rock music, certain smells, a cappella music, insert personal irritant here. But the intensity and violence of some ASD reactions to some things are what are scary and off-putting to neurotypicals. Getting upset because they put mayo instead of mustard on your sandwich and sending it back is one thing, but completely losing your shit because they are writing with a blue pen instead of a black one is incomprehensible.

          • DelphiniumFalcon

            There really does need to be more support groups for people with disabled children.

            And not just the sit and talk kind. More like a support network I guess?

            I think one the biggest things that would help is setting up a group of babysitters that understand what they’ll be dealing with an are prepared. Basic first aid for the autistic kid that tries to take a flying leap off the dresser or even self harm. Infant and child CPR certification and trained how to help choking infants or children for children that have risk factors for choking, breathing difficulties, or anything else that put them in that risk category. Have to carry their certifications and all that too. If they have siblings to talk to them to understand non-verbal cues or other things they know that you wouldn’t look for in non-disabled children.

            I’ve seen first hand how that helps couples. My parents were very good friends with a couple who have a profoundly autistic and at the time completely non-verbal son. The mom hadn’t left him in the evenings since the day he was born. My mom thought that wasnt fair to her and turned to me. I was a pretty successful babysitter back then, people were willing to pay more for me if I had prior commitments as an incentive for me to babysit instead. Had a reputation for being responsible and safe with kids. Mom thought we could help. She asked if I’d be willing to babysit him and I thought “Sure, why not?” I didn’t know what I was getting in to but I learned fast. His sister was the biggest help as I was babysitting her too. She taught me his non verbal communication and how to coax him safely off the high places he liked to climb to and then jump off. Once we got the pattern down it went well.

            I think that’s exactly what his parents needed. I didn’t really ask for much for pay either so they started going out at least once a month for several hours. Dinner, movie, all the things they used to do. They didn’t need to call to check in because they knew he was safe and I had every place they were going so if I needed to call 911 or something I could let them know what was going on. Never had to but it was a good comfort and safety measure.

            I thought my role was common. I didn’t know most families with autistic or other disabled children didn’t have someone they could trust like that. But my situation didn’t have to be unique. There’s more than enough responsible teenagers despite the cries of “kids these days!”

            A lot of people emphasize the need for care takers and it’s not being met. The ones that do have caretakers have to set aside a hefty chunk of change for it. This family would give me between fifteen or twenty bucks for three to four hours. That’s what they wanted to pay and it was a good deal for me! For four hours I usually only asked for $10 or $15. They wanted to give more despite me trying to give some of it back. They were just that happy. Hiring a caretaker at minimum wage would have cost them around $30. I don’t know many caretakers that charge only minimum though so there goes any thoughts of an evening out. But $10 is a good bit of money for a fourteen to fifteen year old. At least it was when I was a kid. I can still make it go pretty far even these days.

            We should still emphasize the need to caretakers, but maybe the best thing to help with these parents in a support group would just having a babysitting option available. It’s definitely not the same, but it’s an evening they might not have had otherwise. It benefits the kids who volunteer too. I didn’t realize “I used to babysit an autistic boy” was something that’s apparently noteworthy to some organizations on the level of leadership programs and 4H stuff. So if the kids need incentive there’s that too. Something to fill the gap until parents the support that’s really needed.

          • Fool on the Hill

            Respite care. I keep saying, families like mine need respite care. Weekly.

          • DelphiniumFalcon

            I agree. Someone should pitch the idea to high-schools or something. If healthcare expenses won’t cover the real deal, then give the responsibility minded kids some incentive. Letters to colleges, scholarship consideration, or just recognition they can put on a resume.

            It’d probably be really popular with the kids looking into healthcare careers. Or, if they’re like my cousin who got their CNA in highschool, a good way to get experience since jobs these days always want x years of experience and said experience can be extremely difficult to get. Plus volunteer work always looks good anywhere you go.

          • Cobalt

            Qualifications are an issue in some cases. Last time we hired a sitter, we ended up taking the kid to the ER after he lost control, the sitter couldn’t work him through it, and he ran into a wall. Getting stitches on head wound on a kid with his kind of troubles is…difficult.

          • DelphiniumFalcon

            That would be one of the big issues, definitely. I think that’s where roping in some older people like in their early twenties that have their CNAs or other qualifications that have difficulty getting hired because of the experience thing.

            Lack of “official” experience and no way to accumulate experience because no one will hire us to get experience is what my husband and I have found to be our biggest hurdle career wise lately.

          • Mel

            My sister and I ended up working as EI-specialists babysitters when we were teenagers. Our next door neighbor had a little girl with ASD and she and my mom taught us how to diffuse situations etc. The advantage we had was that there was a high population of special needs kiddos in a small area around my house growing up, so my mom – or me – or my sister was always available for an emergency call if I needed some coaching through a difficult situation.

            When I first got my teaching license, I subbed a few times in a speech delayed / mild ASD early childhood classroom and had a blast. I got called everytime they needed a sub because I already knew how to deal with a kid who was “melting down” without losing my cool. Actually, those kids were pretty easy since they were mostly the screaming at the top of their lungs while thrashing on the floor type of melt-downs.

          • Cobalt

            Mine’s an on-the-floor-flailer, but also a run-head-first-into-walls-at-top-speeder. The potential for injury for him is pretty high when he’s having a meltdown.

            Could I borrow teenage you for a few hours? I’m TIRED.

          • Kelly

            My mom did get this with Medicaid. I am not sure if that is a state thing or a federal thing. Unfortunately, most people who came to help did not last long. We had a few horrible people and those that were great had to quit for health or personal reasons. It gave my mom a break but that did not happen until he was in his teens.

          • Daleth

            Medicaid is a state thing.

          • Kelly

            That explains the wide variance of services.

          • KeeperOfTheBooks

            Interestingly, I did something similar for a low-functioning autistic kid when I was in high school. Parents got a date night, and they’d come home to a happy kid and a clean house. (I’d clean up after the kid went to bed.) I got some very nice spending money, and, bluntly speaking, one hell of a letter of reference for college applications.

          • Cobalt

            My special needs kid has that “flavor” of Asperger’s. All the emotional stability of a difficult toddler, with less predictability. It’s not cute, it’s not sympathetic, and he looks, physically, like any other kid. Sometimes his behaviors even pass for typical…until they suddenly don’t.

            I don’t talk about it. People tend to either minimize his issues (if they haven’t seen an explosion) or, if they have seen it, call him a brat and me a lazy mom or just run. You wouldn’t believe how many people have recommended just spanking him, as though you can hit hard enough to “cure” ASD.

            Living with him is hard. For me, for his dad, for his siblings. It’s incredibly isolating, completely exhausting, and frequently feels hopeless.

          • Kelly

            I grew up with a brother with severe disabilities. He could not do anything on his own. He was loved by his entire family and was a huge part of our life. It was incredibly hard for my parents especially my Mom. You sound exactly like my Mom. She loved my brother and was his caretaker and protector. She also loved all of us as well. You are a good mother because you care. I remember my mom breaking down sometimes when it was really hard. I respect everything she did for our family. I don’t fully know your circumstances or that of your other children, but one of the best things that happened for my parents was that when we grew up to be adults, we could take care of my brother while they went on dates or vacations. My parents could finally get out and get respite from the responsibilities for a bit. I hope this helps in any way.

          • Allie P

            You don’t know what you see on the blog. In my professional life, I keep a blog, but it’s whitewashed. I don’t talk about the fights I have with my clients or the contracts that get canceled. Maybe their blog is their “venting place.” And that’s okay, too. I know if I were in their situation, I’d need the venting, too.

          • DelphiniumFalcon

            Venting is definitely okay even if it’s not a high traffic blog and it just helps to get the words out.

            Some blogs have such an undercurrent of hate and resentment for their children it actually gets me to the point of nearly calling my mom and asking if she resents that I’m not normal. If she hated me for not being what was promised and all those child psych appointments. I know she doesn’t but to see some of the blog posts about the same issues you had as a child and how much their mothers hate it you can’t help but wonder.

          • Cobalt

            Most moms can separate the child from the issue (whether it’s autism, diabetes, asthma, allergies, or any other condition requiring management) just fine.

            If she tells you she loves you, she’s telling the truth. She has no incentive to lie, because if it wasn’t true, she wouldn’t bother saying it.

          • My youngest daughter had a classmate who was the sister of a profoundly disabled older sibling. In their attempts to give the disabled child every possible advantage, the normal child simply was relegated to second place: expected, at age 8, to also martyr herself for the older child. To list the issues would take too long; one of which was that the parents transplanted the entire family to Hungary every year for some months so the disabled child could get treatment at a special institute. The normal child was never able to make any lasting peer relationships in either her home country or abroad. It was profoundly tragic to watch. These parents, I am sure, had none but the best intentions, but having a totally dependent child in a family distorts ALL the interactions in a family in some way. My daughter’s classmate never smiled, was always tense and edgy, profoundly sad, and the parents never seemed to notice, being so concentrated on the disabled one.

          • Kq

            Well said!

          • Susan

            Very good post. Thank you.

          • NoLongerCrunching

            I am so sorry for what you’re going through. If you live in the DC area, I would be happy to give you some respite care.

          • Kelly

            My parents live in that area. They have great resources in the Northern Virginia area. My parents were very lucky.

        • Gatita

          I went through a nasty bout of PND and wrote some things online that were ill advised and completely narcissistic. I eventually got better and moved on but I do have some sympathy with the self absorbed blogs, especially when you first get the diagnosis and are shell shocked. I think a lot of the moms get better. Some of course were narcissistic/BPD to begin with and only get worse.

          • NoLongerCrunching

            I’m glad you’re doing better. PND sucks.

          • Gatita

            Thank you! It truly does suck but I got through it.

          • DelphiniumFalcon

            You’re right, most absolutely do. I don’t consider a few years to mourn and issue of disability to be excessive. Or if you’re the one affected to blog your entire life as a sort of therapy. It’s crappy and a disability doesn’t mean you now fart inspirational rainbows and glitter. It’s messy, it’s hard, and it’s far from easy. Keeping that bottled inside would be terrible!

            But when it’s been twenty plus years since your kid’s diagnosis and you’re still stuck in the “Pay attention to me! Not my child, look what -I- have to put up with! I’m so wonderful to put up with my defective child!” Nearly every day and still using their now adult child as a prop is when I start to wonder.

            The best parents I’ve seen when they advocate are the ones that have examples like up thread. They’re not sugar coating but they want people to understand their reality very clearly. The tone I tend to see is less “pity me!” and more “understand me” or “have sympathy for me.” Which I always found to be a much more impacting and stays with me longer. And it takes time to grow intothem is t kind of parent and no one is ever perfect at it. Perfection is a lot of pressure and they’re the last people that need more pressure. I guess just seeing that honest, real person instead of a carefully constructed story to bring the focus to being ALL about them is what has always moved me. I can sympathize with a person but not a construct.

            I’m rambling but I can’t always get in to words what I mean. Or if I do start spewing words they’re not always terribly eloquent.

            But I’m glad you were able to recover. I think everyone has their narcissist moments and for some reason the internet is really good at bringing those tendencies to the forefront. It’s what you do when confronted with those moments in your own mind that separates you from the true narcissists. A rational person does what you said you did and goes “That wasn’t a good idea, I need to course correct my life a bit.” The narcissist never considers course correction. The mountain should move, not them.

            You’ve always seemed level headed and open to new ideas to take them in to consideration even when you’re not the main audience. I think that says a lot.

        • Bertrande

          I study autism in my disability studies program and have autistic colleagues. The problem is not autism, it is parents and “warrior mothers” trying to force their children into constructed social norms of behavior. I have read blog after blog after book after interview with a mother lamenting the fact that her autistic child isn’t “normal” because they cannot make eye contact or say “I love you”. Well what about the experience for this child? They are constantly being told that they are bad and wrong, not that their “disorder” is actually awesome and beneficial to humanity. Biodiversity benefits everyone. But to understand the child’s world, that would mean stepping off the victim soap box.

          • Medwife

            When a kid can’t figure out how to interact with other kids, and desperately wants to and unsuccessfully tries, that’s a problem. That hurts my son and when I see him hurting and troubled, goddamn straight I will fight for him. He’s in an awesome early intervention program and life gets better all the time. He’s still himself but now he expresses himself in a much more universally understandable way. He is less lonely.

          • DelphiniumFalcon

            You put in to words better than I could a lot of my issues with the “warrior mama” personas. Sometimes it’s like they’re more at war with their child.

            Like saying “They HAVE to dress properly!” and then lamenting that they tore the T-shirt off again. Having some touch sensitivity myself I get it. Certain fabrics feel awful and the feeling never goes away. T-shirt fabric is one of them. I abandoned most t-shirts a lot time ago. The cut of a shirt can restrict movement in a way that’s extremely irritating. Put the two together and no duh they threw the shirt off again. Maybe try other fabrics? Different cuts of clothing. Maybe they don’t like clothing at all. That’s worst case scenario but instead of MAKING them wear it, if they have the cognitive capacity it’s more rewarding in the long run to bargain, compromise, and rationalize. Not every kid will respond because all kids are different but it beats the hell out of sitting on them and forcing them to do it.

            Or, and this will sound terrible but hear me out, if it’s that important they follow a social norm (especially if it’s for safety) use their sensory sensitivities against them.

            There was a teacher for the boy I babysat who was a genius at this. He loved to climb but we were all afraid he’d hurt himself. He climbed EVERYTHING. He was like a freaking gecko. Coaxing him down just got him back to the ground long enough to turn around and climb back up. Rationalizing didn’t work.

            So this special ed teacher knew he absolutely hated having stuff on his hands. Clay, peanutbutter, dirt, soap you name it. So to dissuade him from climbing she lined his favorite climbing areas with Crisco. He put one hand in the Crisco and with was the Chernobyl of autistic meltdowns. She let him tantrum it out and he tried again. This time she intervened and tried to convince him not to do it. He did it anyways and tantrumed again when the Crisco got on his hands again. This went on a few more times until he decided it wasn’t worth trying to climb up where the teacher told him not to. There might be Crisco there.

            You could see it as cruel to do that but better a meltdown over Crisco than a meltdown in the ER from falling and then being poked, prodded, stuck, made to look people in the eyes, and all the awful noises that come with ER rooms.

            Otherwise with some of the more innocuous symptoms like quiet stimming, there no reason for them not to be allowed besides it being “weird.”

            I stim by bouncing my leg. People think I’m nervous but if just keeps me focused and centered. A lady at church thought I had a problem so she put one hand on my leg and the other over my hands and held on to me. I don’t like to be touched. Especially not without permission. I asked politely if she wouldn’t hold my hands and she let go. My leg did it’s thing and she did it again! It took every ounce of my self control not to start bawling right then and there because she was preventing me from stimming AND getting way too touchy. I didn’t know what to do this time because when I’m in the pre-crying fit zone I tend to just freeze and do whatever possible to make it go away. But this wasn’t going away. As soon as I was out of sight I let loose crying. I had to get that pain out. Because being in that situation manifests similar to physical pain.

            I wanted to tell her I was autistic but people still have that fear of autistic people like they’re ticking time bombs. We can be but not putting us in situations like that keeps the timer from ticking. Or as you said we’re told we’re basically defective.

            With the internet we’re actually finding autistics who were previously thought to be lacking in intelligence because they were non-verbal do understand what’s going on. They just can’t communicate it by speaking. And they’re very aware of what’s being said about them when people assume they’re too far gone to know they’re talking about them. They don’t like it.

            Which makes you wonder how many of these so called lost causes of devastatingly asocial autistm that don’t have a comorbid disorder do want to communicate but we haven’t found a way to facilitate that communication yet. I mean there’s a reason the site for aspies to congregate is called “Wrong Planet.” And we’re the so called social autistics. It can very much be what we imagine communicating with an alien species would be like.

            So yeah… Thank you.

  • moonbeamsilverray

    Yeah Dr Amy…. why do you use dead babies to further your “agenda”!? Oh yeah it’s because your agenda is to prevent dead babies. Go figure. SMH.

    • yugaya

      Well even killer admin Meg Heket ( who tandem kills with Ruth Rodley
      from yesterday: http://www.skepticalob.com/2015/08/ruth-rodley-thinks-dead-babies-are-hickups.html in the HBAWTF group) had to acknowledge that these dead babies that died in a week in homebirth are real and really dead.

      Of course she did that using her usual psychopath zero level of empathy and said “There MAY have been A FEW deaths.”

      A FEW. As in: “No biggie. Nothing to see here, move on my victims, and remind me when you will be attempting to kill your baby so that I can make popcorn and praise your vaginal birth choices.”

      • Trixie

        Here’s the thing about Meg Heket: she may not actually have been that aware of some of those deaths, because she doesn’t actually concern herself much with dead babies. It’s beneath her to think about them.

  • moonbeamsilverray

    The Meg lady’s comparison is totally narcissistic anyway! !! She says she won’t bring up dead MOMS from the hospital births. … news flash, I think babies are the priority. … not the moms (no offense and I am a mom myself ) … yeah your true colors are showing.

  • Amy M

    “You’re ignoring the fact that you’ve lied about one of these death..”
    I don’t see how its lying when you are reporting what others have told you. Sure, some of the stuff could be inaccurate, or downright wrong, but that would mean you were misinformed, not lying. If that woman really wants to set the record straight, then she would give you the alleged report and accept your apology.

    Also, if you were lying/making up stuff, you might name names, you could have invented more than 7, since your agenda when you fearmonger like this is (clearly) to prevent women from making their own decisions about where to give birth. I mean, if you are fear-mongering, go all out, right? Say there were 20 home birth deaths this week, that 77% of all homebirths end in death or disaster and all OBs should section every single woman.

    Also, how likely is it that a baby with congenital defects of the lung, liver, heart and kidney would make it to full term?

    • Azuran

      Even even then, IF that baby really had all those severe congenital anomaly. There are still 6 more dead babies.

      • DelphiniumFalcon

        With all of that though IF they were congenital defects, if they’d had proper prenatal care would some of them have been prevented or the ones that couldn’t be prevented possibly be caught by ultrasound before everything started crashing?

    • DelphiniumFalcon

      I was wondering that myself actually… It’s probably possible, I don’t know since I’m not a doctor, but that’s a lot of congenital defects to survive even with womb support. :S

    • EdLeeMD

      The term “congenital” only means “present at birth”. It does not necessarily mean that it was due to a chromosomal abnormality, or a genetic mutation, or a heritable trait, which are themselves 3 different phenomena. Congenital defects could also be due to an in utero event, such as infection, or amniotic banding, or placental abnormalities, or, as happens in many cases of cerebral palsy, an ischemic injury at the time of birth. Hypoxia at birth certainly damages the brain, but it can damage every other organ in the body as well. Some organs are simply more resilient than others. Not only are patients not informed about these distinctions, it is often difficult for physicians to explain them in a way that people without a medical background can understand. We need more health educators who can bridge this communication gap.

      • yugaya

        In any case there’s a bunch of ’em nasty homebirth advocates citing these congenital issues as cause of death of that one baby and trying to sell it as proof that homebirth had nothing to do with that one death/any of these deaths.

        The only problem with Cassie’s claims is that she flat out lied that there is a completed autopsy report stating that homebirth in no way is to blame for anything. I’m no medical person, but I’ve followed enough investigations into homebirth disasters and read enough coroner reports to know that

        a) full autopsy report will take weeks and

        b) given the circumstances of birth, delay in care due to homebirth, transfer and the efforts that went into saving this baby, there is no way that home as location will fail to be identified as at least a contributing factor.

      • Amy M

        Thanks for the explanation! I didn’t realize that events during pregnancy/birth could be classed as congenital.

    • The Computer Ate My Nym

      I was wondering about that too. I wonder if they’re mistaking hypoxic damage for genetic damage, either deliberately or out of ignorance. The heart, lungs, liver, and kidneys would certainly all be profoundly affected by birth hypoxia (not to mention the brain, obviously). And infection would lead to destruction of the same organs pretty rapidly. For example, infection brought on by GBS or prolonged meconium exposure…

  • anotheramy

    Hmmm, perhaps I’m just too naive myself, but I don’t see the first mom’s story as narcissistic. I see it as naive/ uninformed about how serious how serious those early medical problems are. I work with infants and toddlers with disabilities and it’s very common that parents don’t understand that the disabilities/ delays will be lifelong and/or they don’t view things like feeding tubes etc as serious or predictors of poor health in the future, it becomes the parents’ normal.

    • LittleRedLadybug

      The very nature of narcissism demands that the narcissist be centered in every conversation or experience. They are the people who truly make everything about themselves. In making birth decisions, one of the characteristics of a narcissistic person would be considering (and making a priority) only an experience that focuses on her own wants and needs. Not the needs or well-being of the baby being birthed. To further illustrate the narcissism, the narcissist will seek out information that will support ONLY her viewpoint, is inflexible to change, and shies away from the advice that might remove her from the center of the experience.
      So, with this on mind, reread the narrative. Notice how it is about her experience, not about her concern for the child.

      • anotheramy

        Ah, you make a very good point! Even if I’m right about the denial and parents think their baby will be A-ok after the feeding tube comes out, a normal parent would say “I wish my baby didn’t have to go through all that in the NICU.”
        Re-reading it in light of what you said is even more disgusting. Gosh, I think I prefer my “denial” explanation-it’s easier on my stomach.

        • Montserrat Blanco

          I like to think of myself as normal. My son was a preemie and I HATED that feeding tube. I HATED all the tubes, to be precise. I knew they were keeping my son alive and I knew they were necessary but I still HATED them. I was so relieved when he got rid of one of those tubes!!!! He also HATED them, he was all the time trying to get them out. Fortunately he is doing very well and developing normally. Every single parent I met at the NICU wished not to be there. One mom really touched me. When we were leaving she said: “I do not think I will be able to sleep at all the night before bringing X home. I wish that so much…” I had to practically run away in order to do not cry in front of the whole unit.

          • Daleth

            Exactly exactly exactly. I hated all the tubes, the incubator, etc., even as I silently thanked them for saving him (one of our twins was in NICU longer than the other and needed more help).

            One thing that surprised me was when the doctors suggested that we could step outside while they replaced his IV. They said many parents prefer not to be there because it hurts to see your baby hurt. I was like, “No way! If he goes through it, I’m going through it with him!” We stayed and talked/sang to him throughout.

    • Neya

      I really don’t appreciate the comment about parents of children with lifelong disabilities being naive. Indeed, a feeding tube is risky, but if you have seen your child overcome a ventilator, your outlook on risk and danger is different. If you don’t learn how to live a normal life with the tubes around, how else are you going to continue caring for other children, parents, partners, or keep a job and a stable life? Dear AnotherAmy, you are the one who is very naive or at the very least missing a necessary dose of perspective on the people with whom you work.

      • anotheramy

        You’re right. Terrible choice of words on my part. I apologize.

        • Neya

          Thank you so much for your comment. I appreciate that.

  • mikerbiker

    Well this is utterly appalling- I don’t understand how Dr. Amy is seemingly the only one who cares about these dead and crippled babies.

    Even if one of the babies died from congenital defects, that is all the more reason that that baby should have been born with the assistance of competent medical caregivers.

    • Amy M

      Excellent point. If my friend’s baby died of congenital defects, I’d be advocating for better prenatal care for all women, not insisting that someone who is telling the story is lying or fabricating details. How about Cassie up there getting up in arms about dead babies?

      Let’s say that this baby really did die of a bunch of congenital defects, and even if they’d been noted during the pregnancy, it had been determined that there was no way to fix all the issues and the baby was doomed. In cases like that, (based on an acquaintance of mine that suffered a tragedy like this), is that the doctors will 1)get more opinions to make sure the problem really is what they think, and 2)offer the parents choices about the baby—terminate if its early enough, carry to term and spend what little time baby might have together, etc.
      There are people out there studying all kinds of congenital defect, in an effort to prevent or treat them so people don’t have to go through this.

      • Gatita

        There’s more than a whiff of eugenics about the whole thing.

    • The Bofa on the Sofa

      Remember, there are now more adults alive with “congenital defects” than babies. Because lots of babies born with congenital defects IN A HOSPITAL survive.

      • Houston Mom

        I was born with a congenital kidney defect. Can’t ever remember what it was for long after I ask my mother. Corrected by surgery when I was a baby. No issues since.

        • Faith Bavonese

          I was born 5lbs at full term, jaundiced and not breathing. I’m now 40 years old living the life in DC with my dog and husband.

          I guess this ~person~ thinks I should have just died.

    • Susan

      I must confess first I haven’t read this in enough detail but one has to wonder if multi system organ failure from oxygen deprivation could be morphed into congenital defects by a person without a lot of education?
      ( maybe hence why the chorus faded when challenged?)

      • Kq

        Dr Amy and others raised this point several times in the comments.

      • Susan

        Yes, and there is a post above about the actually meaning of the term congenital which makes it pretty clear I misused the term

    • Mel

      When I read the post, I found myself thinking, “Huh. That’s a lot of systems to go wrong prenatally with no signs.”

      Of course, if the mom isn’t getting ultrasounds or competent medical care, I guess no one might notice that the baby has IUGR or any of the signs a normal OB would pick up on. I’ve had several friends who lost babies who had multiple systems affected by genetic disorders like Edwards Syndrome and Patau’s Syndrome – those showed up pretty damn clear on an ultrasound, so I’m guessing a malformed heart, liver, kidneys and lungs should have been red-flagged.

      Or congenital is misused.

      Either way, the autopsy would be able to clarify if the baby had massive, multi-system organ deformities or had reasonably healthy organs before a HB gone wrong.