"A dazzling series of noninvasive screening options for trisomy 21"

This editorial by Jane Brody does not even pretend to be about anything else but the "dazzling" opportunity early prenatal testing offers to mothers "who would consider abortion" to ensure their fetuses don't have the "serious abnormality" of trisomy 21. Such testing can now be done "with great accuracy in the first trimester, before anyone other than the woman, her partner and her physician need know that she is pregnant".

Which, as Ms. Brody reports, is "indeed exciting findings".

She reports on the editorial by Dr. Joe Leigh Simpson of Baylor which appeared in the New England Journal of Medicine last month, discussing this breathtaking new advance in eugenics science, which Dr. Simpson refers to as "a dazzling series of noninvasive screening options for trisomy 21".

I suppose I am raising one of the last generation of children with Down syndrome who will appear in normal population concentrations, since apparently they are targetted for extinction in the coming years. Because after all, currently the only way to get rid of the "abnormality" is to get rid of the fetus.

How many generations will it take until moms who choose to give birth to children with Down syndrome are viewed as entirely wacky and not deserving of support?

Not to mention what it will be like to be one of say 12,000, rather than 1 of 800 (which is the normal rate of Down syndrome to live births).

Brave new world.

mary

Saruman and Stalin both start with "S"...

Interesting tidbit on the Bioethics.net blog referring to this article about Stalin and his plan to create half-human/half-chimpanzee warriors:

"A SECRET plan to create hordes of half-man half-ape super-warriors to conquer the rest of world has been uncovered in Moscow.

If successful, the plan would have seen humans and chimpanzees cross-breeding to create a new race of "living war machines", which ignored pain and fear and which thrived on hardship."

It didn't work with the technology available to Stalin, but with the expanding knowledge of cellular mechanics and etc, one might pause to ponder the future.

Makes half-orcian Uruk-Hai look plausible. Does life imitate art, or art, life, one wonders?

mary

A foot on both sides of the bed

One of my favorite clients is sick, very sick. I have lots of complicated clients, since I'm a case manager for children with special health care needs only. And this little one is no exception: complicated, congenitally different, precariously clinging to life at the best of times. This is not the best of times.

I go up to visit her at bedside in PICU, sometimes standing next to mom but often just alone, silently watching. I'm praying, really, but maybe I don't want everyone to know. Even though my office is in the children's hospital, I'm community-based and don't get to PICU too often (thank goodness). So none of these nurses know what to make of me, and give me sort of wondering looks. Probably they think I'm a social worker, but I'm used to that. Sometimes I try to impress them and throw in a medical term or two, but it's been a long time since I took care of central lines or suctioned an ETT. Probably it shows.

But what they don't really know about me, most of them, is that I'm also a mom and I also have a very complicated child who once laid in PICU for awhile, recovering from something. And my baby looked an awful lot like this baby. Same almond eyes. Same wispy blond curls. I know there's an inevitable "quality of life" discussion coming up soon, one in which I will, as usual, hold a minority viewpoint.

It's hard to have a foot on both sides of the bed. I say my prayers, and go back to work.

mary

Lest we forget: Pennhurst, Willowbrook, et al

A post on the down-syndrome listserve got me searching for information on Willowbrook and Pennhurst. Not familiar with those names? They were large state institutions for the mentally retarded at one time. Within my lifetime. In fact, Willowbrook did not become a news item until 1972, the year I graduated from high school, (which I know was ancient days to my children but is still not that long ago).

Click on the title above to see some archival video from a 1968 TV expose of Pennhurst. No matter how you feel about the subsequent long and contentious lawsuit and settlement, I defy you not to be moved by the video.

Very interesting that they use a bible verse and picture of a bible to talk about our need to care for society's forgotten children. Couldn't get away with that nowadays on national or local news...but I digress.

mary

Words and response

I would like to clear up a misconception from my previous post. The physician who blogs at Red State M-word did send me email in reponse to my original email to him. It was unfortunately spam-filtered out by my over-zealous work email account. I gave the impression he had not replied, which is incorrect and unfair.

In fact, he has emailed me in quite thoughtful ways since the post, and there is a discussion at his blog, if you are interested. I hope if you are reading what I write, you are interested in the concept of the continued use of words meaning "retard" as an insult.

One commenter wants to know why, if I am so concerned about the use of the word in the term "red state moron", I don't take on all the other pundits who use the word to refer to those in red states. I don't know...where does my energy simply die? It's one thing to discuss this with an obviously caring physician who may not have thought previously about the use of the term. It's another to take on pseudo-news blogs and talk-show blabberheads.

Don't you think?

mary

What the heck is political correctness anyway?

How can an ordinary, everyday person-me, for instance-differentiate between language that is offensive and language that is not offensive, when the same word is used in both examples? For example, the word "moron". "Moron", of course, means retarded. I don't think there is any other meaning for the word in English. It used to have an actual medical-terminology use, in the olden days before almost any of us were born. It was a subcategory of mental retardation, at one time, when it was vitally important for some reason to differentiate between people with IQs of 40 vs. IQs of 20.

For some reason, that was once vitally important.

And a "moron" was a person with a relatively higher IQ than an "idiot" or an "imbecile".

Yet this term has no current medical meaning; it is, simply put, now only used as an insult. Period. It is used in place of "retard", "idiot", or "imbecile". Often preceeded by the superflous "stupid", (which could be read as a comment on the speaker's own language abilities, but I digress).

And lately, or in the last couple of years, heard often in the same phrase as "red state", as in "red state moron". It's related to the news-pundits' use of red and blue to color the states who vote Republican and Democratic in national elections, red being Republican and blue, Democratic. The phrase apparently means something close to "redneck", or perhaps knee-jerk reactionary. It's hard to keep the insults straight, and I prefer to read and avoid talk-radio, so I may not be totally clear on the latest uses of this...term.

So, back to wondering about "political correctness":

There is a medical blog often cited (in some circles) and a recent host for "Grand Rounds" (a weekly round-up of healthcare related blogs) called "Red State Moron". I suppose the title is an attempt to be ironic and satirical.

It is ironic; it is written by an obstetrician who also practices maternal-fetal medicine. He has, in fact, written several posts based on ultrasound images of babies who will be born-not to put to fine a point upon it-meeting the old-fashioned definition of that insulting and irritating and infuriatingly awful word "moron".

Since the blog's author did not respond to my email asking him how a practicing physician who will have to counsel couples prenatally diagnosed with a fetus whose birth will result in a child with intellectual impairment can use the word "moron" in the title of his blog, I thought I'd ask some of you:

Is my reaction simply "political correctness" run rampant?

mary ("Emily's mom", after all)

Same Singer, same song

It's been awhile since I thought much about Peter Singer. I'd prefer not to think about Peter Singer and his brand of utilitarianism, but there it is. It doesn't go away.

The link above is to a current article on his website discussing pretty succinctly his views on infanticide for disabled babies. Oh, he is careful to point out he is not saying disabled babies are not worthwhile. He is quite logical.

In fact, he appears to say infanticide is OK because it is logical.

Anyway, he then argues a slippery slope (it appears to me to be a slippery slope, but you know, I don't have any advanced degrees) that, if disabled people argue that disability is only a "difference", there will be no need for governmental and pharmaceutical and other support. Well, I suggest you read it for yourself, because thinking about Peter Singer gives me an intense headache and my stomach starts to get all quivery.

People often accuse Singer opponents of misquoting and misconstruing Singer. On the contrary. There it is. Read it yourself.

Please.

mary

"What Your Doctor is Reading"

Click on the above title to look at a monthly summary of current medical literature aimed at the non-medical reading public.

It's interesting to note November's report includes a review of the early pre-natal tests for Down syndrome. Of course, there is the usual statement that early testing is important not just for abortion decisions, but to "prepare" moms for the fact that their child will be disabled, if they decide to continue the pregnancy.

The fact is that this latter option is simply included so that the speaker (be it the authors of the original study report or the author of the review-or both) can say that, of course, this early testing is not aimed at increasing the abortion rate for trisomy 21. The speakers would not want to be accused of having a hidden agenda, or presenting their information in such a way that they appear to be counseling prenatal testing as a darn good thing because it leads to earlier abortions.

However, there are, in this one little review, four sentences explaining how important this is for moms who want to abort early. And one sentence explaining how finding out early can help "prepare" for the birth.

Just an interesting observation.

mary

Who owns my hope?

This week I attended our hospital's annual bioethics day. Our featured speaker was Chris Feudtner, MD, PhD, MPH. Dr. Feudtner is a pediatrician at Children's Hospital of Philadelphia. He specializes in bereavement, end of life issues, and palliative care. In addition to Dr. Feudtner we had two panels made up of parents and patients, including a mother whose son died recently, from cancer, at the age of three.

I was deeply moved not only by the panelists' stories, but also by Dr. Feudtner's kind and calm discussion of very complex issues that have to do with the dance that occurs when families of sick children meet the medical team around the bedside for decision-making. The topic was "Hope: Help or Hindrance", and while immediately the parent in me was already armed for combat regarding that last word in the title, I am glad I removed my weapons at the door and listened. Because Dr. Feudtner talked about listening, about how to sit and talk with families about hope, and how to come up with "alternate hopes" for situations that are so difficult they can't really be simply described.

Too often the medical team begins talking to parents who must receive a bad diagnosis or prognosis as though the aim of the conversation that is about to occur-the goal for the conversation itself-is to manage hope instead of tell the truth. As though it were somehow vitally important to simultaneously tell the truth about the medical condition and best-guess of prognosis, and destroy any hopeful response at the same time.

And "who owns that hope?" is what I am always tempted to respond. Whose hope is it, and when did it become yours to mold and shape?

From my point of view, it's the team's responsibility to give truthful information in difficult situations, and to be therapeutic in relationship with the parent as part of the professional duty to that parent, since children are not experiencing illness or disability in isolation but in family. It may be your responsibility to help the parent work through what kind of hopes to have, and how to have them, and how to change them as time goes on. But it's not your responsibility to destroy them.

You don't own them, after all.

mary