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Casey's Dysplasia Story
Casey's Dysplasia Story
Casey was born with bilateral hip dysplasia --- her hips weren't seated properly in their sockets, so they were prone to dislocation.

There's a fair amount of information up online on the subject, but most of what's been written by parents is from people who've had a pretty bad time of it --- I remember being a bit shaken by what I found when I went looking for info three years ago.

But Casey's outcome was a good one, and so I've been meaning to post about it for a while. What follows is adapted from something I wrote for a mailing list for parents of kids with dysplasia about a year back.

Dysplasia isn't all that rare. At least one in every thousand kids is born with it, probably more. It's more common in first-borns and girls, and in some European countries --- in France, for instance --- it's seen frequently enough that every child is tested for it at birth. (Casey's a first-born, a girl, and part French.)

Casey's condition was picked up by the pediatrician on our first doctor's visit, two days after she was born. By manipulating C's hips, the doc was able to feel a slight "clunk" as one of them slipped in and out of its socket. She sent us to a pediatric orthopedist in a hurry --- we went in for an exam the next day, and started treatment on the spot.

If your doctor diagnoses your child's dysplasia shortly after birth, treatment is straightforward, though a bit intimidating at first. The child is fitted for something called a Pavlik harness, which holds the hips in place. (That's Casey in her harness at right, in a picture taken the day it came off.) The harness nudges the kid's legs into an M position, like a squat --- while she was in it, we referred to Casey as our little Frog Princess.

The Pavlik harness works by keeping the hips snugly in their sockets so that the sockets develop properly around them. Because of this, you leave the harness on all the time. From when Casey was three days old until almost eight weeks later, she never took it off --- no baths, no slipping out of it to change diapers, no nothing.

This was January and February, so she couldn't wear most of the clothes we'd bought and been given. That wasn't a fun few weeks, particularly since we were dealing with jaundice and breastfeeding troubles at the same time.

But leaving the harness on, as much of a pain as it seemed, is absolutely crucial. If the harness doesn't work, the next treatment option is usually a spica cast, a hard body cast that extends from the legs to the chest. If that doesn't work, surgery is usually the next step. The longer the hips go without proper correction, the more invasive the treatment is likely to be, and the greater the chance of really serious long-term problems down the road.

Our orthopedist told us that the most important thing we could do was to not "cheat" with the harness --- to leave it on full-time, and not to defeat the harness by putting her in positions where her hips were flexed out of position. After eight weeks, an ultrasound showed enough improvement that the orthopedist approved moving her to part-time in the harness. After another few weeks she was sprung for good.

And that, I'm happy to say, was almost three years ago. Casey's one-year follow-up showed no problems, and at her two-year checkup the orthopedist said her hips looked "perfect." She'll have x-rays every few years until she's grown, just to be safe, but there's every indication that the problem's gone.

We were lucky, but our outcome wasn't all that unusual. If the problem is caught early, you're seen by a competent specialist, and you follow your doctor's instructions about the harness --- and if, like I said, you have a bit of luck --- there's a good chance even with bilateral dysplasia that the Pavlik will be enough.

If you've gotten this far and you have any questions, feel free to leave a comment or drop me a line by email. If you've reached this page because of a web search, and you've got a kid with a dysplasia diagnosis, I wish you as good of an outcome as we had.

[Keywords for search engines: congenital hip dislocation, congenital dislocatable hip, Congenital subluxatable hip, developmental dysplasia of the hip, developmental dislocation of the hip, ddh]

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lauredhel From: lauredhel Date: February 21st, 2006 06:22 am (UTC) (Link)
I'm very happy to hear of the good outcome. Hugs to Casey!
From: (Anonymous) Date: January 17th, 2011 10:11 am (UTC) (Link)

painter 11

wow. that was pretty awesome. they just keep getting better and better!
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