The Neurologist

The Neurologist said we had every right to question his advice about seizure medications. He leaned against a paper-covered table, and my husband and I sat in chairs against the wall. Fiona, who was sick with a cold that day, sat in her stroller. “Do you have to follow my recommendations? No,” he said. “You don’t. That’s your right as a parent.”

I was relieved. I’d been hesitant about a particular drug he recommended for Fiona. I wanted to check with the Wolf-Hirschhorn syndrome community and see about other people’s experiences with the drug.

“Let me give you an analogy,” the Neurologist said. Then he told us this story:

He once had a patient who was “profoundly disabled,” he said. She was in a wheelchair. She needed a feeding tube. (There is a way to list these details as facts, and there is a way to list these details as tragedy; the Neurologist did the latter.) She also had frequent seizures. Her father, who was a renowned something or other, was distraught by his daughter’s disabilities. He felt she was taking a toll on his career. When his daughter was around twelve, the father asked the Neurologist: “When is enough enough?” The father asked when the medical world could let his daughter die.

My eyes widened. I waited for the Neurologist to condemn the father’s question.

He didn’t. Instead, his thin, long, seventy-something-year-old face stayed neutral. He detailed the fall-out of the father’s question. The Neurologist had to report it to the hospital, who investigated, and the father and the mother divorced, and the whole ordeal was tragic, really tragic, said the Neurologist.

A knock on the door came. A nurse popped her head into the examining room and asked for the Neurologist. “Excuse me,” the Neurologist said, and my husband and I nodded, and the Neurologist left the room.

Alone with our daughter now, my husband and I turned toward one another.

“What?!” I said, shocked. “How did we get from seizure meds to euthanasia?”

“No idea,” my husband said. “Now I wanna see where this thing is going.”

I laughed, but it was a laugh stemming from the urge to cry, or an urge to do something beyond crying, which did not exist to my body, and so I laughed.

The Neurologist returned. “Where was I?”

“Hospital investigated, father and mother divorced,” I said.

“Right. And it really ruined his career. But,” the Neurologist paused. “Did the father have a right to ask that question?” The Neurologist, I realized, spoke in questions and answers. “Yes,” he said. “Yes, I believe he did. He might not have liked the answer, which was no, we can’t end your daughter’s life.”

I was both relieved the Neurologist consented to that, and furious that I had to wait for a doctor to consent to that.

“But I believe he had every right to ask the question.”

I looked at the Neurologist, baffled.

“Just like you have every right,” the Neurologist said, “to not give your daughter this medicine. You’re her parents.”

I wanted to shake my head violently at the analogy, not just in a way that meant No but in a way that meant Wait, what? Where am I? I wanted to shake my head so hard my cheeks would slap against my gums and afterward I’d find myself in a different doctor’s office, where a different doctor didn’t bring up the killing of disabled people, where a different doctor didn’t liken my reluctance of a drug to an inquiry about killing one’s kid.

“We’re never going back to him again,” I told my husband when we got into the car. My husband agreed.

Yes, the Neurologist was a terrible listener. Yes, he made terrible analogies. But here is mostly what angered me after the Neurologist’s office that day, which happened maybe a year ago but hasn’t left me yet: I’d venture to say very few parents of able-bodied kids have had to suffer through a doctor’s story about euthanizing kids like their own. I’d venture to say most parents of able-bodied kids don’t have any of their doctors bring up the legal and ethical question, “Should kids similar to your kid be killed?”

If the father wanted to euthanize a child who belonged to virtually any other disenfranchised group, I doubt the doctor would argue that a father “has every right to ask that question.”

Yesterday, Claudia Rankine received the PEN Open Book Award for her book, Citizen: An American Lyric, about the everyday micro-aggressions people of color must endure. You’ve probably read it, but in case you haven’t, Rankine writes in poignant prose about the pervasive instances of racism in day-to-day life, and the wearying effects those instances have on people who experience them. It’s a gorgeous, effecting, timely work. It also makes me think about the micro-aggressions people with disabilities (and their families) must endure.

Here’s something I didn’t expect about having a child with disabilities: I didn’t expect there’d be public conversations about whether people like my child should live. I didn’t know I would read headlines about a Princeton Ethicist arguing that babies like my child, if they became too costly, should experience “non-voluntary euthanasia.” I didn’t know I’d have to learn that a professor who said these things could still keep his job. I didn’t realize such micro-aggressions would be a part of permissible public discourse, spearheaded by high-profile men. He has every right to ask the question.

As lawyer and disability rights activist Harriet McBryde Johnson writes of Peter Singer, in this brilliant NY Times essay from 2003, “He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.”

But the take away is: of course she feels threatened.

My husband and I drove home that afternoon, resigned to get Fiona back to her old neurologist, who was twice as far but at least never talked about euthanasia. I called that office and said yes to the next available appointment: six months out.

In the meantime, Fiona still technically fell under the Neurologist’s care. One day, a nurse from his office called and wanted to know if my daughter’s weight had changed. I said yes, by a pound. The nurse consulted with the Neurologist, who said that, based on Fiona’s weight, he wanted to increase the dose of her emergency seizure medicine. I filled the prescription, keeping the medicine on hand for whenever Fiona had a seizure that didn’t stop on its own.

A few months later, we finally had an appointment with the other neurologist. He asked me if we’d had to administer Fiona’s emergency seizure medicines recently. No, I told him. Not in a long while. He asked to see the medicine. I pulled out the plastic Tupperware container in which we keep a syringe of it.

He looked down at the syringe. He got quiet a moment. Eventually he said, “This dose is enough to stop her breathing.”


Dear Readers, if you feel so moved, feel free to share the micro-aggressions of ableism that you’ve experienced. 

26 thoughts on “The Neurologist

  1. I have to tell you that this post made me cry for a few moments. I cried, of course, in empathy for you, your husband and your dear child. I cried because it makes me despair that these things still happen, these encounters unfold — still — even after many of us have been experiencing, working on and writing about them for (in my case) more than twenty years. And I cried, too, remembering the micro-aggressions of abelism that we’ve experienced — the time Sophie’s leg broke during a seizure and the orthopedist decided not to rebreak and set it but set it as is because “it’s not like she’s going to be a model or anything, right?” And then, of course, there was the visit with the very prestigious director of genetics at UCLA who declared Sophie a “disaster” in front of her, me, and the six residents and students who were traipsing around with him that day — “learning.” I wrote about that experience, and it was published in one of those Cup of Comfort books. It’s called “Invisible Child,” I think. In any case, thank you for sharing your own story. My heart goes out to you — to all of us, really. I suppose we should all keep writing, keep telling, keep yelling and fighting.
    And I’d add that sometimes the best defense is a royal “F*@k him.”

  2. Please tell me you reported the euthanasia doctor for the medicine if not for his analogies.
    I’m so disgusted and heartsick for you and your beautiful daughter. How horrific. Thank god you didn’t give her that medicine. You do know better than him.
    Sending warm thoughts your way!

  3. A Parents instincts are the best always. Every parent has to make decisions for or about their children. I did it your parents did your friends will do some will not agree but you know what is right for your child

  4. What a terrible neurologist. Imho, neurologists are, in general, a pretty awful lot (I have MS and have met a number of them). But this guy is particularly egregious, and I agree with “Happygolucky”; I hope you reported this doc. Your writing is wonderful and your parenting exemplary! Best of luck to you and your family.

    • Maybe that the (questionably) micro of saying the parents have the right to ask that question as a red flag that macro could be coming?

      Like the Hecking Huge and Macro of the ending.

  5. I don’t even know what to say, Heather. I am sick to my stomach. I can’t believe anyone could look in her eyes and talk about her like he did, much less prescribe her something that could kill her. I am at a loss here.I am so sorry that happened.

  6. OMG. I audibly gasped at the end of your post. I’m so glad you had no reason to ever use that medication. And that neurologist is a piece of work.

  7. And while this is in no way, absolutely no way comparable to the ableism you experienced….I am infertile due to a congenital abnormality. Over the 4 years that it took us to have a child, I endured so much “it’s God’s will,” implying we were defective and unworthy of reproducing. I to this day feel excluded in discussions of the physical aspects of motherhood and their qualification of proving I am a mother since I did not give birth to my child (surrogacy). However my biggest fear is that someone will look at my special needs child and say, “looks like there was a reason for your infertility and you shouldn’t have reproduced.” And my son has very mild issues but people are so cruel and there is so much judgment about infertility. If you don’t want to publish this comment because it isn’t a true definition of ableism, I understand. It felt good to share.

  8. I commend you for seeing the red flags and deciding to listen to them. I commend you for trusting that voice inside your head that said, “this doctor does not see my daughter as a whole person.” And then I read the last line. And I just can’t get past it. I don’t know much about the law but I wonder if you could press medical malpractice charges. My mind keeps going, “what if…” and then I stop myself because the thought is too horrifying. Or perhaps, share this story on the doctor’s yelp page, heaven forbid he do this to someone else’s child. I have trouble trusting the medical profession sometimes but this just made my stomach drop. I’m so glad you never used the “emergency medicine”. I love your blog, thank you for sharing even the scary, dehumanizing and infuriating moments with us.

  9. Two years before we had a diagnosis (of Angelman’s syndrome), I said to our neurologist, I just wish I knew what what was wrong. He said, “Ideally we’d just do a biopsy of her brain”. I cried all the way home, swearing we’d NEVER see him again! So callous! But, good seizure control won. We kept taking our daughter but always quietly hated him. On the other hand…not so with the pediatrician who got tired of our Sunday morning trips to the ER when our baby kept spiking high fevers…the day she asked if we’d ever considered a ‘home’ was the last time we saw her.

  10. Oh no. No no no. That is criminal. Fiona like my daughter is alive, a blossom, a soul. To say it is hurtful is not good enough but I don’t have the words.

  11. Oh.
    I will say again, the parts of my life that make me want to crawl under the covers and hide or cry or both – have NEVER come because of anything my son has done, or said, or even *not* done or said. Always these moments have come from *others*
    Thank you for sharing this and
    – Ms

  12. What an awful awful experience for you all. How is it possible that a man like that is still practicing medicine? He is in the very privileged position of caring (hmmmm) for our children.
    I’m not at all surprised that this isn’t something you’ve been able to let go of yet.
    Thanks for sharing such a horrible time so eloquently.

  13. This is not the same, but I wanted to add to the conversation as an adult with cerebral palsy. I walk with crutches – but I also live independently and am a college professor. So often I get the ‘what’s wrong with you?’ question, or other comments from strangers. On the bus, in the store, from the HR manager at work, etc. On the one hand, people don’t see it as a huge problem. They are just curious. On the other, I am living my life, and want to get on with things. It often feels like my self and my body is public property in ways that others are not, just because it works and looks different than expected. I think the concept of micro-aggression is an important one to bring up in this context.

  14. Brutal. Of late, the microagressions I’ve been noticing are the conversations that I overhear in coffee shops and restaurants. Yesterday, speaking very loudly, two women spent nearly 30 minutes discussing a friend who was open to having a child with a disability. The conversation mostly consisted of detailing the miseries she would encounter and, over and over, condemning the choice as outlandish. In the process, they spent time talking about a family with a medically fragile child further detailing the perceived miseries and tragedy of their lives. “Why would you do it.” It was a statement rather than a question. I was just trying to eat breakfast with my lovely 7 year, who would likely qualify as a tragedy in these women’s eyes.

  15. Quite honestly, while I totally understand your point of view, this doctor’s analogy isn’t surprising to me. In fact, in the Netherlands, not only do parents have the right to ask about euthanizing their disabled kids, but doctors have suggested that parents consent to euthaanasia (on babies, I don’t think euthanasia on children is legal yet, but doctors are advocating it). I am here from William Peace’s blog and didn’t read your entire post before I wrote my own opinion on my blog. At first, I thought the neurologist suggested you have Fiona euthanized. I am honeslty relieved that he didn’t. Maybe it says something about the culture I live in (the Netherlands, the world’s first country to legalize euthanasia) that I am relieved that the neurologist reported this situation to the hospital.

  16. Your post just took my breath away. Completely. And I am not even a parent. But as a human being, who has been through quite a bit with the medical system (My husband is a transplant patient- ),
    I am finding it hard to breathe still. Just thinking about this story more than ten minutes after reading it.
    I hope everyone who reads this remembers it. So that someday when they are faced with following their own instinct vs. listening to a crackpot doctor (i qualify this because not all doctors are, many are quite wonderful)- they follow their own instinct. Like you did.
    Like my husband and I had to as well.
    It can (and does) make all the difference.)

  17. Dear Heather:

    I have followed “Star in Her Eye” for approximately one year, but have never commented before. However, since one of my avocations is medical ethics, this post stabbed me in the heart.

    I, too, hope you reported this “Dr. Mengele” to his hospital, and to the state medical board.

    Although I am a longtime vegetarian and aware that Peter Singer is known for promoting animal rights, I consider him a despicable member of homo sapiens: the question of whether he is (morally) a human being I will leave unanswered. Nearly 20 years ago, I read an academic book detailing the Nazi euthanasia program (Aktion Tiergartenstrasse 4), and have never forgotten it. In more recent years, I have read about physicians in the Netherlands selecting euthanasia for disabled newborns (the Groningen protocol), sometimes without parental consent.

    I support Roe vs. Wade in a general sense, and the withholding of active/aggressive medical treatment for newborns and children with incurable, terminal diagnoses (e.g anencephaly), but “euthanasia” after birth is a definite line we should never cross. History has been there before, with devastating results.

    As long as she enjoys life and is comfortable, long live Fiona!

  18. Holy S! (pardon my implied “colorful metaphor”) I have always remembered your posting about “presuming competence” ever since I read it. Yay for changing neurologists, and thank God you never had to give Fiona that dosage.

  19. You struck me over and over again in this piece, especially with the last line. But although the last line is emotionally gut-wrenching and terrifying as the mother of a child with profound disabilities and loads of prescriptions including seizure medications, the concept of micro-agressions really hits home on a day-to-day basis. You summed it up wonderfully, “If the father wanted to euthanize a child who belonged to virtually any other disenfranchised group, I doubt the doctor would argue that a father ‘has every right to ask that question'” and I really want to read Rankine’s book. Thank you for your insight.

  20. I am new to your blog, and have been working my way through the archives. I have found many great pieces, but I refrained from commenting because they were older pieces.

    This one was bone-chilling. Micro-aggression is too kind a term to use for it. This doctor tried to murder Fiona!!!

    My friend in India, has a kid 7 months old, diagnosed with Down syndrome. She is encountering this kind of behavior from all the specialists and doctors her kid sees, with the exception of the geneticist. Puzzlement at her insistence to provide any medical care to her disabled kid is near universal.

    When I heard her stories, I implored her to try to immigrate to the US, where the society and medical community is more inclusive. Reading this story gives me pause, is the society really more inclusive, or just “politically correct” ?

  21. I hope you reported the doctor for that dose. I don’t see how that is accidental. Even a court would find him guilty of something, although im not certain if it represents a malpractice case.
    I’ve dealt with so much in my childhood that remembering is a headache. In short, my child psychiatrist flipped me around on so many medications and after i finally left i heard she was sued and lost her license over it. It contributed to my mental breakdown at 13. I’ve also dealt with doctors harrassing me over my weight ever since i was 9 years old. It was so bad that I ended up with CPTSD and and an eating disorder over it. Other things contributed to the CPTSD but that’s a major one that hit at puberty and really messed me up. I have PCOS and I did retain my baby fat mostly in my stomach, so i looked chunky. My weight was off maybe 10 pounds but i wasn’t a short kid and i had a big frame and big bones. But because these doctors pushed this crap on me, ive ended up obese and now I have like 5 conditions that make it hard to lose weight and physical conditions (arthritis among them) makes it nearly impossible to exercise much. Im also autistic and no one would diagnose me until i was almost 18. My childhood was a hell of peer abuse, doctors who manipulated me and bullied me around, and hating myself for things I didn’t know was undiagnosed medical problems. I can say from experience that doctors actually know very little. We are taught to expect the most from them and its usually not the case. Listen to your instincts. That’s what i have to do now. I refuse to be bullied by a doctor again.
    I hope your little girl is doing better now, and I hope she grows up happy. That’s all that really matters in life.

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