notes

Learn about contributions made by Shriner's Hospitals for Children, a leader in the treatment of osteogenesis imperfecta.

Read a profile of Dr. Harold A. Sofield in the Who's Who in Orthopedics, available through Google Book Search.

Get details about rodding and fragmentation surgery from the OI Foundation (PDF).

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No, the doctors weren't anxious to release the infant to home care. Although she had exceeded their set expiration date, six months having gone by since birth, Amy fractured and fissured all the same.

She couldn't be cured of the rare genetic bone disorder; it was there at birth and there it would remain, taunting like a disobedient child.

During those six months, nurses found that if Amy was placed on one end of the bed, and one of their own pushed up and down on the other end, something broke. Maybe not something major, but something cracked.

It should be noted that osteogenesis imperfecta patients endure fractures that are trauma-induced or spontaneous and unprovoked, this next one an example.

It was past her bedtime when Amy roused from her sleep that night. She didn't know the time, just that it was late. Four-year-old Amy swung her tiny body around and let her legs hang over the edge of her bed, not yet long enough to allow her toes to scrape the floor beneath them. She had hair styled like her mother's then, though not quite as long; her brunette locks flipped out just beneath the ears. Not that it was combed now.

When it was, her mother dressed her in plaid jumpers and placed a bow in that combed hair. Amy's bangs were kept short, and she never smiled with teeth, simply upturned lips.

She awoke to go to the bathroom.

Amy peered at her reflection in the mirror. Then, a tickle in her nose, and she raised her hands to meet the irritation instinctively. Ahh-choo!

From her bent elbow burst a rod, a stainless steel rod, thinner than a shoelace and not quite as flimsy, extending two inches from where it should.

The cries awoke her parents, who were out on the next flight to Chicago with intention of visiting Dr. Harold A. Sofield. He is credited with inserted the rods in the first place.

They were fished out while awake. Though, it must be said, Amy was distracted with a card game similar to concentration during the surgery at Shriners Hospitals for Children, where Sofield was chief of staff.

During the late 1940s, he developed and published a surgical procedure for strengthening and correcting meek and misaligned bones after experimenting with various methods on large numbers of children with osteogenesis imperfecta. His method of choice, innovated with Dr. Edward A. Millar, was exemplified in Amy.

A radical movement at the time, he deliberately sliced the long bones of the body and fit a metal rod into the intramedullary canal, lacing together the segments, not unlike how raw lamb is slid on a shish kabob skewer.

And so, stuffed like the Middle Eastern variety, Amy enjoyed the usefulness of metal rods in rehabilitating and preventing fractures.

The raised scars and crooked arms she lugs with her today pinpoint where the method didn't quite work. A rod won't stay in a bone that won't heal.