My Birth Defect and its Impact on My Life

Spica Cast

As usually happens, this blog article started out as a comment in response to someone’s Facebook post and metamorphosed into the following essay.

Fifteen years ago, I underwent double THR (Total Hip Replacement) also known by medical professionals as Arthroplasty.

I entered this lifetime in the year 1948, arriving with a yet invisible Karmic defect: congenital acetabular hip dysplasia (the ultimate “pre-existing condition”). Unfortunately, no one discovered the problem until I started walking. By then, the cartilage had ossified, which meant that to realign the joint, I, and by default my parents, faced an undetermined period of corrective therapy. (Today, a simple physical examination performed at birth can usually identify the condition) My pre-school years were unquestionably more of a trial for my long-suffering parents than for me.

Alice and Norman, pioneers that they were, envisioned the grand adventure of traveling to Australia to raise their family. I was a toddler at the time, but I seem to remember the two of them sitting at the kitchen table in Jonesville, New York, poring over maps and brochures, excitedly picturing the possibilities. Later I learned that they also considered settling in the mountains of Colorado until my prognosis dashed their dreams.

The underlying deformity (an abnormally shallow acetabulum coupled with a flattened, severely misshapen femoral head) turned out to be not only serious, but rare. A total dislocation of the left joint forced a noticeable and potentially problematic size and length disparity between my left leg and my right. Early onset of osteoarthritis is common with this type of birth defect.

Wikipedia explains that this condition may be due to a hormone imbalance carried down through the generations. Now I am more eager than ever to receive my DNA results from, although it may not include the details I’m hoping for since I chose not to order the extended report which focuses primarily on health issues.

Reading over Mom and Dad’s extensive hand-written notes, I learned that my first harness was the kind with the giant padded pillow between the legs to keep me from bringing my knees together, which would have caused further dislocation of the joints.

I soon graduated to a full cast that encircled my waist and extended to my ankle on the left side and to my knee on the right, completely immobilizing my pelvis and both legs in the “frog-leg” position. The doctors put me to sleep for the procedure. When I woke up and realized I couldn’t move, Mom reported that I cried. I cried all the way home in the car. Not until we returned to a familiar setting did I begin to settle down. Eventually, I accepted that I was not going to be able to move my legs and figured out how to fall asleep on my back.

Later, a new, less restrictive cast (called a Spica Cast) allowed me to move my right leg while the left side remained immobilized. Changing the cast proved a traumatic event for me. I became convinced that the doctors would accidentally saw off my leg during the procedure, causing me to scream pitilessly for my Uncle Eddie until they finished. (Why Uncle Eddie and not Daddy? This I can’t explain.)

The Orthopedic Pediatrician gave Mom and Dad the grim news that I would need to wear a cast for a full year. I can only imagine what parenting an active toddler in a full body cast must have put them through. Understand that this was the era of cloth diapers, long before the advent of Huggies and Pampers!

I vaguely recall a series of harnesses, slings, and splints which followed the cast, along with an unsuccessful trial pair of crutches. The apparatus I remember best was the hip abduction brace which encased my left leg from hip to foot and allowed a greater range of motion than any of the earlier contraptions. The doctor recommended I wear the brace at all times, except bath time.

During my frequent visits to the Hospital for regular progress exams, the doctors always told me that someday I would need hip replacement surgery.

An employment opportunity arose for Norman in Fort Lauderdale, Florida. Due to a recent housing boom, construction jobs were plentiful. A buddy of his, excited by the prospect of good paying, steady work, encouraged him to leave New York State and join him in sunny Florida. So, he and Alice bought a trailer, hitched it to their station wagon, and loaded up the back with me and little brother Stevie along with all our possessions, and off we went on a quest of another kind.

I clearly remember the day the brace came off for good. I think I was four years old.  Standing on the hospital bed looking down at my mother, I obediently kept the weight off my left leg as I had been taught. “You don’t have to do that anymore,” Mommy explained cheerfully. “You can put your foot down; it’s all right!” Tentatively, cautiously, I lowered my left foot. Mom lifted me down from the table and together, hand-in-hand, we walked out of the hospital unaided.

For the remainder of the afternoon, I worked on perfecting the art of running, dashing from one end of our patio to the other until a crowd of curious kids gathered to watch. My only regret was finding that my ability to “gallop” no longer felt the same.

Being more the artistic type than the physically active athlete allowed me to get by without too much pain and suffering as I matured, other than the occasional bout of sciatica and a goofy little limp, which I always considered part of my charm. My friends told me I walked like Charlie Chaplin.

By my late forties, however, things were starting to get bad. The cartilage had all but disappeared, leaving me with excruciating bone spurs and advanced osteoarthritis. I used to tell people it felt like driving around in an old beat-up car with no rubber left on the tires – just the metal wheels. After a while, the rims themselves bent and rusted and the Old Gal became destined for the junk yard.

I delayed surgery because of a lack of decent health insurance. When I could no longer tolerate the chronic aching, grinding and clicking, and the cramps that aggressively clutched at my calves and my toes, I finally summoned the courage to call my local Social Security office. I remember crying as I described my predicament to the hapless clerk who picked up the phone that day.

Horror stories abounded about people with disabilities not qualifying for benefits. I worried I would need to hire an advocate to fight on my behalf. Fortunately, my Mom took meticulous notes from the day of my diagnosis and kept track of every X-Ray and doctor visit throughout my childhood. In addition to her excellent record-keeping, I also had archives of old black and white photos of me in my cast, me in a succession of harnesses, slings, and splints, and me in my full leg brace with the 6” tall shoe my Daddy built for the opposite foot – all to prove to the government that I was no deadbeat.

I compiled pages of detailed background information on every doctor I had visited over the past decade, including names, addresses, phone numbers, and appointment dates, and whether they took X-Rays. I filled out all the SSI forms exactly as instructed and made sure to use my best penmanship. I documented every step of my harrowing life’s journey, and chronicled the emotional and physical ordeal my suffering imposed on my friends and loved ones. I pleaded for the faceless administration clones to show compassion and grant me my earned government aid.

My next-door neighbor, a former IRS employee, guaranteed that while she personally could not grease any palms for me, the typical social worker would be happy to receive an application packet like mine.

She was right. My submission sailed through the red tape, and even though it seemed to take FOREVER before I started receiving Medicare (I was only 54 at the time) the day finally arrived when I could confidently schedule an appointment with the best Orthopedic Surgeon in the state – indeed, the country.

After marking the date in my calendar, no amount of poverty or despair had the power to dampen my spirits. The first surgery was a success. I had to wait over six months for the second operation due to a delay in my Medicare Insurance, but it was worth the hold-up to get the doctor I wanted. I didn’t gain an inch in height, but my legs are finally the same length. The casual observer would undoubtedly notice that I still tend to walk with a slight waddle – a little like a Penguin, I suppose.

I have stayed healthy these past fifteen years without having to give up things I enjoy, like playing the piano, and indulging in my many creative activities. While I do suffer from continuing lower back pain and peripheral neuropathy (a condition which causes a sensation of intense burning, tingling, and itching in my swollen ankles and feet) I still have the stamina to run the vacuum occasionally, spend over an hour pushing a shopping cart around my local Costco warehouse, and devote hours to revising the first edition of my medieval fantasy novel in addition to working on the sequel and hammering out memoirs like this for my blog.

Though separated by nearly 3,000 miles, I treasure any time I get to spend with daughter and baby granddaughter. I even experienced RUNNING through Grand Central Station a couple of years ago while delighting in a brief, but exhilarating, summer vacation. And that was after a full day of shopping in downtown New York City!

Before Diagnosis