A Catholic Citizen in America

When I was in college, first time through, someone who had one leg in a cast struck up a conversation with me. He was clearly not having a good time.

His leg, particularly his foot, was healing from a motorcycle accident. It hurt. Even worse, he worried that when the muscles grew back, they wouldn’t work right.

He had legitimate concerns. He may also have expected somewhat more heartfelt sympathy than I showed. He’d started talking with me because he noticed that I was walking with a cane.

I tried to provide the social connection he apparently wanted. How successful my effort was, I have no idea.

The conversation did, however, help me appreciate how lucky/blessed I was. Being born with defective hips, I never faced the adjustments he was dealing with.

On the other hand, I live with the results of a doctor’s decision to use me for his research. Without my parent’s knowledge.

• Hip Dysplasia and Me
  • Shock at the Reference Desk
  • Responses
  • Options, Operations, and Outcomes
  • A Failed Prediction
• A Birth Defect That’s Not a Birth Defect?

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Hip Dysplasia and Me

Most of us start out with bodies that are in good working order. A few, about 3%, don’t. Some birth defects can be easily fixed: these days, at least. Others get in the way of what most of us call a “normal” life, and some are fatal.

A birth defect I’ve been up close and personal with is hip dysplasia.

Our hips have ball-and-socket joints, letting our legs rotate in several different directions. For most folks, these joints work fine: sometimes for life, sometimes with no problems until well into middle age.

Occasionally something goes wrong, and the socket part of that joint isn’t deep enough.

Hip dysplasia is doctor-speak for this problem. The odds for being born with this problem, or developing it in infancy, are about one in a thousand.

The good news is that for many folks, the condition isn’t all that serious. When it is, we’ve got options for treating it. Some are less disagreeable than others.

Serious or not, spotting hip dysplasia early is a good idea. Which is why newborn health checks now include moving the legs in a particular way: a ‘click test’.¹ It was probably routine in my part of the world by the time I was born, in 1951.

When a doctor my parents trusted gave me the ‘click test’, I screamed. He said something like ‘that hurts, does it?’

Shock at the Reference Desk

My parents may have started wondering about my muscle-and-joint health when I was six months old, and still had trouble rolling over.² Or maybe not. I don’t know when they learned that I had congenital hip dysplasia.

By the time I was in kindergarten, or maybe first grade, I’d had two operations. But I could walk, and I’m getting ahead of the story.

The doctor who diagnosed congenital hip dysplasia shortly after my birth should, I think, have told my parents. I’ll grant that my opinion is biased.

I don’t know what the American version of medical ethics said about that sort of thing, back in 1951. Maybe what he did was officially “ethical”.

Those were interesting times.³ So are these, for that matter.

At any rate, he kept the diagnosis to himself and had my parents bring me in at intervals to see how my hips were developing. Or, as it turned out, not developing.

He kept records about what was happening to me. Then he wrote a learned paper on the topic of untreated congenital hip dysplasia.

A medical journal published his article.

A copy of the journal wound up in a college library’s collection.

My father worked in that library. He was head librarian, which let him get assigned to the reference desk as often as the rest of his job let him.

Reference desk duty wasn’t, I gather, the favorite task for most. But the long intervals between someone coming with a question gave my father time to read.

His interests were as eclectic — or unfocused — as mine, which may help explain why he pulled a medical journal off the shelf for ‘reference desk’ reading.

That’s when he read the doctor’s learned paper.

Responses

My father identified me as the test subject.

My mother intercepted him before he reached the doctor.

She told my father, “no: I will speak with him”. Which she did.

And never shared what they discussed.

Letting an incandescent Irishman conduct the interview might have been the more humane choice. The doctor disappeared a few days later.

Options, Operations, and Outcomes

Sometimes putting an infant in a cast, keeping the legs at an angle that helps the joint grow properly, corrects hip dysplasia.

On the advice of another doctor, my folks had me put in a cast. Years later, they told me that my legs were stuck out straight; like a frog’s.

It was heavy, but I suspect that dragging myself around helped me build upper body strength.

Anyway, it didn’t work.

So a surgeon sculpted a deep-enough socket from bone he took from my left femur.

Good news: after the operation, I learned to walk.

Not-entirely-good news: something went wrong, but the doctor spotted it.

After another operation, I still had a moderately-functional left hip joint. Which I see as good news.

But a bit of cartilage that should have been between the two bones wasn’t there any more.

Another oddity was that my left femur came straight up to the hip socket. That probably explains why I couldn’t — and can’t — extend my left leg to the left.

I can, actually, but I have to reach down and pull it. I’m not convinced that those muscles are still there.

Even if they were, they wouldn’t have had the leverage to work properly.⁴

Having a left hip that acted as if it was a stiff hinge joint was an inconvenience.

What hurt, literally, was the missing cartilage. Without it, that joint had no lubrication. Whether I was sitting, standing, walking, or running: the bone of my femur was rubbing directly on my pelvis.

Lying down was no picnic, either, but early on I learned how to arrange my legs so that I could sleep.

And I could walk, thanks in part to distinctly uncomfortable physical therapy that kept my left hip joint somewhat mobile.

So, basically, and on the whole — good news.

A Failed Prediction

Fast-forward to when I was about 12. My parents and I were living in Minnesota’s Metro/Twin Cities area, and had another medical expert look at me.

He said I’d be completely and totally crippled by the time I was 16. Unless my parents let him try out a nifty procedure. No guarantees made or implied.

Later, they asked me how I felt about it. I said that if it had to be done, it had to be done. They declined the expert’s offer anyway.

That doctor may have been on the level. I’m no expert, but X-rays showing late-stage arthritis look a bit like X-rays of my hips. So maybe, given his experience, he assumed that I really would be completely crippled in a few years.

That didn’t happen.

Decades later, my wife told me I was getting replacement hip joints. I suspect she’d gotten tired of seeing me grind my way from one part of the house to another.

Two operations later, I was a couple inches shorter. I was also able to move without experiencing discomfort. For the first time in my life.

I definitely see that as good news.

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A Birth Defect That’s Not a Birth Defect?

Turns out that hip dysplasia isn’t the only quirk I was born with.

My medical records now include ADHD and ASD (Autism Spectrum Disorder): both diagnosed when I was well into middle age. Actually, it’s ADHD-inattentive. Hyperactive I am not.

Apparently ADHD, inattentive or otherwise, “is primarily genetic with a heritability rate of 70-80%”.⁵ That makes sense to me, since I’m much like my father and some of the kids are much like me.

Google’s AI Overview told me that:

“Attention-Deficit/Hyperactivity Disorder (ADHD) is a neurodevelopmental disorder that’s present at birth or develops shortly after. It’s not a birth defect, but it’s likely caused by a combination of genetics and environmental factors.”
(Google AI Overview (January 21, 2024)) [emphasis mine]

Saying that something is a disorder present at birth and not a birth defect could be another example of how AI is still a glitchy new technology.

Or maybe the assertion reflects one aspect of my culture’s growing understanding that someone can live with disorders and disabilities, and still be a person who deserves a measure of respect.

Take how the CDC handles the term “birth defect”, for example:

“…While ‘birth defect’ is a medical term, it does not mean that an individual is ‘defective.’ It refers to health conditions that develop in a baby before birth. In an attempt to be accurate and sensitive, we try to use the specific name of the condition present at birth when possible….”
(About Birth Defects, CDC (U. S. Centers for Disease Control and Prevention))

Time for me to wrap this up with a very brief look at how I see life, health, and all that.

Life is precious, a gift from God.

Being healthy is okay. So is not being healthy: although trying to stay or get healthy is a good idea, within reason.

Human beings are people, and people matter. Which should be obvious, and that’s yet another topic.

Medical ethics matter, too. Because, again, human beings are people: whether they’re doctors, patients, test subjects, infants, or old geezers like me.

If all this sounds familiar, it should. I’ve talked about it before:

• “Good Nutrition, Radioactive Breakfast Cereal” (June 24, 2023)
  • ‘What They Don’t Know Won’t Hurt Me’?
  • Mindsets
• “Edited Twins, Genetic Engineering and Bioethics” (March 11, 2023)
  • Louise Joy Brown, HEK 293 and Me
    • Bioethics, From a Former Lab Rat’s Perspective
• “Couney’s Baby Incubators vs. the Progressive Era” (February 8, 2021)
  • Efficiency, Eugenics, and Me
• “COVID-19, Cells, Viruses and mRNA Vaccines” (December 5, 2020)
  • Trust and Prudence
• “Miscarriage, Stillbirth, and Hope” (October 9, 2016)
  • ‘Why be miserable?’
  • ‘It’s not fair.’ So?

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¹ “Birth defects” may not be a polite term, but checking for them makes sense:

• Wikipedia
  • Ball-and-socket joint
  • Birth defect
  • Hip dysplasia
• Birth Defects
  CDC (U. S. Centers for Disease Control and Prevention)
  • About Birth Defects
• Presentations of Hip Dysplasia
  Nationwide Children’s Hospital
• “Marino Ortolani: ‘Does That Baby’s Hip Go Click?’”
  Carla Stecco, Andrea Porzionato, Veronica Macchi, Ilaria Fantoni, Luca Ortolani, Raffaele De Caro; Perspectives in Biology and Medicine (Autumn 2014) via PubMed, NIH

² Milestones on the 50th percentile highway:

• CDC’s Developmental Milestones, National Center on Birth Defects and Developmental Disabilities (NCBDDD)
  • Important Milestones: Your Baby By Six Months

³ We keep learning, the trick is learning the right lessons:

“…John Lantos, a pediatrician at University of Missouri-Kansas City School of Medicine and expert in medical ethics, says the experiments were indicative of America’s post-war mindset. ‘Technology was good, we were the leaders, we were the good guys, so anything we did could not be bad,’ he says. It wasn’t until the ’70s, after the Tuskegee study, that Congress passed federal regulation requiring a specific kind of oversight.’…”
(“A Spoonful of Sugar Helps the Radioactive Oatmeal Go Down”, Lorraine Boissoneault, Smithsonian Magazine (March 8, 2017)
(Quoted in “Good Nutrition, Radioactive Breakfast Cereal” (June 24, 2023) > Mindsets)

⁴ Bones, cartilage, and muscles:

• Wikipedia
  • Femur
  • Femoral neck (“This article relies largely or entirely on a single source….”)
  • Gluteus medius (a muscle that attaches to the upper femur)
  • Gluteus minimus (a muscle that attaches to the upper femur)
  • Hip dysplasia
  • Hyaline cartilage
    • Articular cartilage
  • Muscles of the hip

⁵ ADHD, ASD, and (apparently) viewpoints:

• Wikipedia
  • Attention deficit hyperactivity disorder
  • Autism (“This article may be unbalanced toward certain viewpoints….”)
• Autism Spectrum Disorder (ASD)
  CDC (U. S. Centers for Disease Control and Prevention)
  • About Autism Spectrum Disorder
• Mayo Clinic
  • Adult attention-deficit/hyperactivity disorder (ADHD)
  • Autism spectrum disorder