There is no such thing as a worthless conversation, provided you know what to listen for. And questions are the breath of life for a conversation.
-James Nathan Miller, American author
|Violet Josten enjoys a sunny day in her Spica cast. Photograph courtesy of Jesi Josten.|
Developmental dysplasia of the hip (DDH) is a common childhood disorder, affecting approximately 1 percent of children by the age of two weeks. More than 99 percent of children diagnosed with DDH are infants, with firstborn children being at greatest risk. In terms of treatment, DDH is a clinician's dream. More than 95 percent of children with hip dysplasia in the United States are completely cured within a year of diagnosis, using an almost universally available, inexpensive orthotic device, the Pavlik harness. Even in the rarer, more complex cases, DDH is still almost universally curable by the age of three using other well-known protocols, including closed reduction or surgical open reduction of the hip combined with a Spica cast. Most DDH patients seem to accept these treatments with ease and resilience, and according to Betsy Miller, author of The Parent's Guide to Hip Dysplasia , adults who went through DDH treatment as children typically say they retain no memory of being treated and have gone on to enjoy healthy, active lives.
But for parents of "hip babies" (children with DDH), dysplasia treatment is no dream. When given their child's DDH diagnosis, parents are oftentimes thrown into confusion and fear. "Hip parents" who were interviewed for this article consistently told The O&P EDGE that they found many elements of their child's treatment frustrating and upsetting, and though their children had successful outcomes, parents struggled to learn the most basic elements of adaptive care.
Bridging the Gap
As the O&P clinician's scope of practice evolves from primarily providing devices to managing care, DDH treatment offers clinicians an opportunity to practice exactly the kind of systems-level care that can lead to ideal outcomes and represents top-notch business practice. The experience of parents is integral to the treatment of their children, and effective communication among parents and clinicians is at the heart of effective pediatric care. The O&P EDGE interviewed both parents and practitioners about what they wished the other knew about DDH. Everyone was eager to participate in the conversation. Clinicians offered insights that parents may find empowering and other clinicians may find enlightening. Parents had urgent requests for clinicians, plus invaluable information for other parents.
Though the experience of every hip baby is different, all patients go through similar processes during diagnosis and treatment. This article offers perspectives from parents and clinicians at each stage of treatment, highlighting opportunities for learning and communicating while providing care. This article doesn't represent the opinions of all parents and clinicians of children with DDH, but instead offers a window into some of the myriad viewpoints on and methods for treating these children.
A diagnostic session with an orthopedist is many parents' first real encounter with DDH. In these sessions, most parents crave quality information and a reassuring bedside manner, and orthopedists are in a prime position to provide it.
"I had never even heard of hip dysplasia in kids before [the diagnosis]," says Jesi Josten, whose daughter Violet was diagnosed with DDH at six-months old. "I had only heard of it in dogs." Josten is highly active on the hipbaby.org listserv, an online group in which hip parents share information and experiences. "[The 'hip parents'] have all said, 'If only someone would have put hip dysplasia in just one paragraph of those new-baby books, I might have known to look for certain things, [and] maybe I could have caught it earlier.'"
Miller told The O&P EDGE that to be in a situation like Josten's is "huge, and you worry. From a doctor's point of view, hip dysplasia treatment is very simple and not a big deal in many cases, but from a parent's point of view, it's a very big deal." Miller herself was successfully treated for DDH as a child and recalls that her parents were very concerned by her diagnosis. "Parents want to know about whether their child is in pain, about whether their child will be able to walk and run."
Scott Mubarak, MD, understands this need. The former president of the Pediatric Orthopedic Society of North America has spent his entire career serving as a pediatric orthopedic surgeon at Rady Children's Hospital, San Diego, California, where he tries to create a no-fear zone that emphasizes communication and practical comforts. He says, for example, that when newborns are undergoing ultrasound diagnosis in his office, he encourages the parents to "feed the babies so that they're comfortable and happy. [Instead of crying,] they actually do very well." He also regularly assures parents that they did absolutely nothing wrong to cause their child's condition, and that their child has an overwhelmingly good chance of "being completely fine" when treatment ends.
Philip H. Stearns, MSN, CPNP, is a Yale-trained nurse who has worked at Rady Children's with Mubarak for more than eight years. "We use illustrations to show parents what we're talking about," he says. "If possible, we compare their child's imaging to that of a child of the same age with typical development to illustrate the difference and what we'll be working to achieve for their child." Stearns says that they emphasize that the child is not necessarily in pain and will likely not present with any symptoms. "We're treating to prevent problems down the road," he says.
|Emma Rose Spellman wears a Pavlik harness. Photograph courtesy of Jennifer Tonetti-Spellman.|
No matter how well a clinician communicates in person, parents consistently report that even the best in-office explanation needs supplementing. "Even if the [clinician is] doing an excellent job of explaining, how much of it can you remember two days later? And what about the questions you've thought of by then?" Miller asks. "What parents ask for over and over again is take-home information presented in a way that's easy to understand, supportive, and respectful of the audience."
Miller says the best information is up-to-date, with "a reassuring tone and...simpler words so that people can read it without spending a lot of time trying to sort out what it means. And it's always useful to have illustrations if you're dealing with concepts like bone structure."
Fitting or Treatment
After a DDH diagnosis, most families quickly begin treatment. No matter what form treatment takes, parents universally reported to The O&P EDGE that a clinician who provides adequate training plus extensive information about adaptive equipment and care can make the difference between parents having a positive early treatment experience or a terrible one.
Darrell Christensen, CO, has worked at the University of California San Francisco's Orthotics and Prosthetics Center for 28 years, where he helps to provide about 100 Pavlik harnesses per year. "There is a grand total of 11 buckles on this device, and in order to take the child completely out of it, you disconnect nine of them. You pull it out of the box, and it's nothing but pieces and parts and straps, and parents go, 'Oh my God.'?" Christensen advises parents not to "let a member of the medical profession dictate...when you have had enough instruction. It's okay to be politely insistent." He advises other clinicians to "be really reassuring, and comfortable with the harness. If someone doesn't understand, I'll pull out a Sharpie and mark which buckles match. I'll put colors on them. You can tag all kinds of things."
In some cases, however, clinicians may have to learn from experienced parents what inexperienced parents need most.
"I really implore the medical community to get...more educated on how you can help the process be more seamless in our moving from having a regular baby to a hip-dysplasia baby," says Jennifer Tonetti-Spellman, owner of BabyHip Wear, White Plains, New York, a company that produces clothing exclusively for babies in dysplasia devices. Tonetti-Spellman's own daughter, Emma, was immediately fitted with a Pavlik harness after being diagnosed with DDH at three-and-a-half-months old. With no advance notice, and information about nothing but the harness, Tonetti-Spellman found that "everything had to be adapted.... Not one single item of clothing could fit her after the brace went on," she says. "We had to immediately buy a brand-new car seat, then a stroller with open sides. We had to figure out completely on our own how to bathe her in the brace."
|Emma Rose Spellman stands without help. Photograph courtesy of Jennifer Tonetti-Spellman.|
Tonetti-Spellman says that the stories she hears from BabyHip Wear customers are consistent with her own. "It turns my stomach when I hear all these stories of how parents have been told very little, or basically nothing, just, 'Here's the Spica.' Well, how do you change the diaper? What's the easiest way to keep the smells down? One woman was told to literally rip off the sides of her car seat to allow for the Spica cast."
Stearns says that Rady Children's heeds the need for abundant communication. "Oftentimes when you talk with parents, especially new parents, they get sort of shell-shocked, thinking, 'Oh my gosh, we have to use this brace for our brand-new baby? How are we going to deal with this as well as everything else the newborn goes through?"
Mubarak's office then goes a step further. His administrators keep a database of experienced hip parents who are willing to talk with new parents. If the parents of a new patient have questions or concerns, they are quickly matched with a peer mentor.
"And by all means, I encourage patients to educate themselves," he says. Josten agrees that research and connection with other parents can be essential."The listserv has been so great," she affirms. "Doctors can tell you what's going to happen with surgery and other procedures, but none of them have had a kid in a body cast."
Though the physical outcomes of children with DDH are already excellent, when parents and clinicians communicate about hip dysplasia, a whole new world of healing can occur.
Morgan Stanfield can be reached at