What my brain tumor can teach us about contemporary midwifery and lactation care

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In the summer of 2000 I was diagnosed with a brain tumor.

I had developed double vision because a benign tumor, a meningioma, was pressing on the nerve that controlled the movement of one of my eyes. The tumor was small, but located deep in my brain. That meant that surgery to remove it would likely lead to significant nerve damage.

[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]Under the guise of what’s best for women, midwives & lactation professionals recommend what’s best for themselves.[/pullquote]

Surgery was, up through the 1990’s, the only treatment. However, as a physician I had access to those who knew about the latest options. A dear friend, a neuro-radiologist, told me about stereotactic (“gamma knife”) radiosurgery, which is not surgery at all, but a one day course of radiation to kill the tumor.

I consulted a neurosurgeon, widely reputed to be one of the best in the US, to find out what he recommended. He recommended surgery.

I asked him:

Which treatment had the highest cure rate? He told me that surgery had a cure rate of 85% and radiation had a cure rate of 95%.

Which treatment had the highest complication rate? He told me that surgery would likely lead to loss of sensation on the left side of my face and deafness in my left ear. Radiation had no complications beyond local irritation.

If radiation treatment failed, would that make subsequent surgery more risky? He told me that it would have no effect.

So I asked him why he was recommending surgery if radiation had a higher cure rate and a lower complication rate. To his credit, he replied honestly:

“I don’t do the gamma knife.”

In other words, under the guise of recommending what was best for me, the surgeon recommended what was best for HIM. His financial and non-financial conflicts of interest led him to recommend the application of his personal skills.

But here’s the key point: I don’t doubt that he believed surgery was best.

Because of his personal experience, he believed implicitly in his surgical skills. Because of his lack of experience with the new form of radiation treatment he distrusted it. Because too much of medical practice is doing what you have been taught to do — in his case surgery — he recommended surgery.

That’s also the ethical problem at the heart of contemporary midwifery and lactivism. Under the guise of what’s best for women, they recommend what’s best for themselves.

And here’s the key point: I don’t doubt that they believe it.

Because of their personal experience, midwives and lactation consultants believe implicitly in their own skills. Because of lack of broader experience with complications, they are sure they don’t exist or are “variations of normal.” Because too much of midwifery and lactation medicine is recommending what they’ve been taught to do, they always recommend themselves and their limited skills.

Midwives like Sheena Byrom and Hannah Dahlen consistently recommend the application of midwifery to just about every situation. Byrom and Dahlen consistently demonize anything they can’t bill for — such as epidural anesthesia or C-section. If they can’t do it, they fervently believe, you don’t need it.

They are blind to the fact that their financial and non-financial conflicts of interest cause them to recommend what is best for midwives, NOT what is best for mothers and babies.

Lactation professionals like Amy Brown, Jack Newman or Natalie Shenker relentlessly recommend breastfeeding and greater financial support for lactation professionals. It doesn’t matter what the situation might be, the answer is ALWAYS more lactation support and more breastfeeding and pumping. They consistently demonize formula because they can’t bill for it and it undercuts their own economic wellbeing. As far as they’re concerned, if they can’t do it, you don’t need it.

They are blind to the fact that their financial and non-financial conflicts of interest cause them to recommend what is best for them, NOT what is best for mothers and babies.

Most women don’t have the luxury I had, not merely the ability to consult multiple providers, but the professional contacts to know whom to call. Ultimately, I chose to have the radiation treatment, a 9 hour marathon in a machine like an MRI, involved having a metal frame anchored into my skull. The results — as I had been counseled — were not immediate since it took time for the tumor to shrink and die. It was three months before I noticed any improvement and six months before the double vision completely resolved.

On the other hand, there was no surgical recovery. No drilling into my skull. No bleeding or infection. No hearing loss or loss of feeling in my face.

I do not begrudge the neurosurgeon for his recommendation to have a major surgical procedure that I didn’t need and could have harmed me. He was honest and I was aware that surgeons tend to recommend surgery even when there are other (sometime better) treatment options available. They know their own skills and trust them. They don’t trust technologies that are new and with which they are unfamiliar.

But a better surgeon, with greater awareness of his own financial and non-financial conflicts of interest, would have made it his business be thoroughly familiar with treatment options beyond those he could offer. He would have recommended the radiation treatment — or counseled me about it at the very least — since that was an option I deserved to have. It was also the option that was best for me, far better than what he could offer.

Ethical midwives, with greater awareness of their own financial and non-financial conflicts of interest, would counsel women about all options and not demonize the ones they can’t offer. I don’t doubt that they believe with every fiber of their being that midwifery care is almost always best. They can’t see the truth that just because it is best for them, doesn’t mean it is best for babies and mothers.

Ethical lactation professionals, confronted with the fact that they have single handedly made exclusive breastfeeding the leading cause of newborn re-hospitalization, would offer formula to any woman who wants it, not demonize formula and certainly not insist that what women need is more of the “support” that harmed their babies. I don’t doubt that they believe with every fiber of their being that breastfeeding is almost always best. They can’t see the truth that just because it is best for them, doesn’t mean that it is best for babies and mothers.

It was my brain tumor, in my head, and I deserved to know all the options for treatment so I could make MY choice.

When it comes to birth and breastfeeding: her body, her baby, HER choice … free from pressure by those who stand to benefit from offering only what they can do.

  • Feel like discussing this piece by a doctor (who’s apparently uncritical of moxibustion and acupuncture) who decided to trust her body and deliver her breech baby vaginally? Luckily, baby was okay, but the piece was full of appeals to nature.

    https://slate.com/technology/2019/10/breech-babies-c-section-vaginal-birth-evidence-trust-women.html

    • rational thinker

      This article actually made me a bit angry. That woman has an ego problem and I think she is a little delusional. I dont think her marriage is going to last very long either. Clearly she did not consider his wishes to have his daughter born safely.

      I find her to be selfish and suffering from an ego problem.

      • attitude devant

        Her claim that head entrapment is rare is horrifyingly wrong. Right off the top of my head I can think of multiple homebirth midwives who’ve had an entrapped head leading to a dead baby. I’ve done lots of breech deliveries (usually a second twin) and even in those circumstances, which are the best you could hope for, it’s something I find nerve-wracking.

        • rational thinker

          Yeah I thought head and/or shoulder entrapment was the biggest risk for a breech not rare.

    • Cristina B

      I couldn’t finish reading it. She’s a doctor who insists she knows the research better than the doctor suggesting the C-section…yet she believes you can spin a breech baby by moxibustion. I can’t speak for all breech babies, but mine had a small head with a barrel chest and thick thighs. You can’t spin someone who is bottom heavy, regardless of how much wishing is done. And I hated how she presented the C-section as all risk for the mother, but didn’t point out how in a vaginal breech, the risk to the baby is much higher (maybe she did and I didn’t read that far). Maybe I’m odd, but I’d rather have surgery and not risk my baby’s head getting stuck.

      • rational thinker

        “She’s a doctor who insists she knows the research better than the doctor suggesting the C-section…”
        That was the first hint I got that she is delusional and a bit arrogant. She is a family doctor not an OB, I know family docs can deliver babies too but I think I am going to believe an OB on this one.

        • Cristina B

          My GP suggested a vaginal delivery for my breech because I was only 35 wks along and he was my second. The OB said she would rather not. When he came out the size of a full term baby, the OB said he would have made her grey had I attempted a vaginal birth. I was thrilled at the idea of a C-section since I wasn’t a fan of labour from the first time around and when my GP suggested trying a vaginal delivery, I nearly cried.

        • AnnaPDE

          Though really the point where she thinks moxibustion is an effective treatment for something that’s not just the perceived lack of smelly smoke is a big red flag about this doctor. What other completely unscientific woo does she believe and does she treat her patients with that?

      • attitude devant

        And yet she’s horrified and ?surprised? when the baby needs resuscitation.

  • Sue

    This is a great analogy. The health care provider who gives the best advice is one who understands all the data but holds no perverse interest in any particular treatment modality.

  • mabelcruet

    Point of fact about Sheena Byrom-in the UK, midwives generally are employed by the NHS and get paid a salary regardless of the number of women they look after. If a woman is admitted for midwife led care, and ends up transferring out to consultant care, the midwives still get paid their normal salary. Personally, I think the main reason certain midwives recommend midwifery ahead of medical management isn’t financial, its loss of control. I have to go to morbidity and mortality meetings in all the hospitals I provide a service to, and these are usually held in conjunction with their stats presentations-lots of numbers about the number of deliveries, the number of sections, stillbirths, epidurals etc. I get a very definite sense that the percentage of women transferring in labour from midwife led to medical led care is something that certain midwives feel is too high and should be reduced, and that if a woman ends up transferring its written off as unnecessary, defensive practice and they should have been allowed to keep working with her. I’ve occasionally seen midwives commiserating with each other when they lose a patient this way (lose as in not dead, but no longer their patient).

    • fiftyfifty1

      I wonder if they also feel they are “competing” regarding their epidural rates. If so, that is disturbing.

  • attitude devant

    I think you’re being too kind to your surgeon, and to the midwives and LCs. Did everyone else sleep through the ethics classes I took in medical school? Is there not training in ethics in midwifery? We exist to serve the patient. Period. Patients are not there to provide us with a steady stream of income. We are there to promote healthy outcomes and to do so in a manner that respects their autonomy and individual circumstances, whatever they are.

    Medicine is rife with examples of this: arthroscopy of the knee being overused, back surgery being contemplated based on imaging without trial of non-invasive techniques. Point being, you’re not supposed to look at patient as the nail belonging to your hammer. You’re supposed of offer a range of choices where available and help her figure out what’s right for her.

    I’ve been a gynecologist for 30 years. There are lots of things we used to do but no longer do because better options have come along. Hysterectomy is way less common because the problems we used to solve with hysterectomy are solved with tubal ligation or with endometrial ablation. I was trained in a whole raft of surgical techniques for repair of pelvic organ prolapse that have been thrown out because we have better options now, not all of which are in my scope of practice, so I often refer people out for them.

    I’m not holding my breath that midwives and LCs will ever embrace the ethics you propose though. Something about reality distortion fields and naked self-interest…..