Violet Macarthur was only 30 seconds old when she was diagnosed with bilateral developmental dysplasia of the hip (DDH).
Her mother Amanda knew the diagnosis was likely, as her five-year-old daughter had been diagnosed with the same thing. But she hoped her newborn daughter would escape the restrictive brace, painful ultrasound sessions and bi-weekly specialist appointments.
DDH occurs when the ball at the top of the thigh, the femoral head, isn’t stable in the socket; the ligaments that hold it all together can be loose and stretched. In Australia, all newborn children are checked for hip problems at birth, and those with DDH indicators then undergo ultrasounds to confirm the diagnosis. The condition affects one in every 600 girls, and one in every 3000 boys.
The left hip is the most commonly affected side, but bilateral diagnosis – when both sides are affected – is not uncommon.
While most DDH cases resolve themselves in the first two weeks of life, cases that are diagnosed later call for treatment plans that can include splinting using a variety of harnesses, casts and traction, and surgery.
“It was hard not to be disappointed,” says Amanda. “You wonder, ‘What could I have done differently?’”
It’s a sentiment that rings true for many parents of babies diagnosed with DDH. But in most cases it’s out of their control.
“Historically, the biggest risk factors have been breech position in utero and a positive family history of DDH,” says Colin Whitewood, an orthopaedic surgeon who specialises in adult and paediatric conditions.
If not diagnosed early, DDH can cause a range of health problems later in life. Laura from New South Wales wasn’t diagnosed until she was a year old because she didn’t present with a ‘clicky’ hip. At 18 months she underwent surgery that put her in a cast, and at 17 she had a bone graft to create a formed hip socket.
“I've had hip problems all my life,” says Laura. “As a young child the main thing I noticed was that I couldn't sit cross-legged on the floor like the other kids. As I got into my teens the pain and discomfort started. I would have to quickly stand up in class because it felt like my hip was going to pop out.”
Even now, Laura says she still feels the effects of hip problems with worsening pain, especially in damp and cold weather.
Watching for signs of DDH
Children without DDH risk factors (firstborn, female children, breech births and genetic markers) can still have or develop DDH as a relatively silent condition.
Dr Whitewood suggests parents keep an eye out for signs such as:
- asymmetry of the hips
- popping or clunking of a hip
- decreased range of motion of the hip
- leg length discrepancy
- an exaggerated waddling gait with an excessive inward curvature of the spine(known as exaggerated lumbar lordosis).
Watching out for those silent conditions meant that Kristi Abblett*, a mum to Jack, was able to push for further investigation of her son Jack. Jack was 11 weeks old when he was diagnosed with DDH, after Kristi noticed abnormalities in his behaviour.
“I noticed that Jack was pooing to one side of his nappy. He also couldn’t get his left leg into the 'frog' position,” she says. “His DDH hadn't been picked up during the health checks as they were looking for a 'click'. But he had no sockets, so there was no click. An ultrasound showed he had severe hip dysplasia in both hips.”
Joanna Hadgraft*, mum to Elizabeth, has a similar story. Elizabeth, a breech twin, was diagnosed by a proactive paediatric GP who pushed for treatment around six weeks of age. After following a wait-and-watch approach, an ultrasound deemed it necessary to fit a Correctio brace at 12 weeks. The brace caused numerous issues, the most severe being femoral nerve palsy, which was caused by the way the brace positioned her legs.
A different approach and different brace was needed, so Elizabeth was fitted for a Rhino brace that she wore for 23 hours a day, seven days a week for six months. Gradually, over another six month period, Elizabeth’s brace usage was slowly reduced. She became brace-free at 16 months, and Joanna is currently waiting to see if her femoral head will develop.
“The ‘wait and watch’ part is the hardest,” says Joanna. “Not knowing and just hoping nature takes the right path is difficult.”
Coping with the diagnosis
Even though Amanda had been through a similar diagnosis before, there wasn’t much information available to explain what DDH is and what the treatment plan would involve.
“It felt like we were alone after the diagnosis,” says Amanda.
Kristi had similar feelings, adding that it was difficult to speak up when she knew something was wrong with her son.
“I had difficulty convincing some practitioners, but I'm glad I pushed. Then, when Jack was diagnosed, the knowledge that something was 'wrong' with my new baby was very upsetting," she says.
Kristi suggests parents of newly diagnosed children should join a support group and get informed: “There are plenty of groups on Facebook, or strike up a conversation with a parent at a clinic. Chances are they share the same concerns as you.”
There is a supportive community of ‘hip baby’ parents that are ready to go through it all with you, agrees Joanna.
“I’d like to tell other parents to hang in there,” says Joanna. “It will possibly be the most challenging situation you have ever encountered. Don’t delay. Push for treatment.
“You’ll all come out the other end stronger and wiser - and with a healthy little set of hips.”
*Names have been changed
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