Developmental dysplasia of the hip: what new parents need to know

Jessica's daughter in her Pavlik harness; and after her treatment.
Jessica's daughter in her Pavlik harness; and after her treatment. Photo: Supplied

Unless you're told otherwise during a pregnancy check up, a healthy baby is exactly what you're expecting on delivery day. You've decorated the nursery, binge-watched One Born Every Minute and bought all the baby gear. You're as prepared as one possibly can be when the birth day arrives, overjoyed to hold them in your arms, holding their tiny fingers in your hands.

This describes me on my daughter's birthday only six short weeks ago. My contentment at the birth of this perfect little person was, however, short-lived, when a newborn examination detected what our doctor referred to as 'clicky hips' – or what I now understand to be developmental dysplasia of the hip (DDH).

Assured that DDH is entirely treatable did nothing to ease my fear of the unknown and only ignited feelings of guilt. Had I done something in pregnancy to cause this? Could I have prevented it? As I've learnt, the answers to those questions are no.

Dr Angus Gray, Head of Orthopaedic Surgery at Sydney Children's Hospital, describes DDH as a 'packing defect'. "When a baby has been tightly packaged, one or both hips have not been able to form a normally shaped socket," he explains. 

Risk factors for having a baby with DDH include this being a firstborn baby, a female or a breech baby, or if there's a family history of DDH. 

In 80 per cent of cases, DDH spontaneously resolves itself in the weeks post birth on its own with no treatment.

But for our daughter and many others, an early ultrasound confirms that treatment would be required in the form of a brace, known as a Pavlik harness.

Reassured by our doctors that nothing can be done during pregnancy to prevent a baby being born with DDH, I was thankful for an early diagnosis to start treatment. Dr Gray says early diagnosis is key to a quick and effective outcome, as later diagnosis can lead to more invasive treatments. Lesson: ask for your newborn's hips to be checked at birth and scheduled follow up examinations.

Despite a positive treatment plan in place, I couldn't help but feel devastated, like I'd been robbed of a 'normal baby' experience. But passing children in the cancer ward, these feelings turned to guilt. How could I feel sad about my daughter's diagnosis when so many parents are coping with much more?

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I now accept that it's common and completely valid to grieve the loss of what we anticipated our early parenthood experience would be. "Adjusting our mindset to a new reality is a process and can involve saying goodbye to some of the hopes and experiences we spent nine months imagining in pregnancy," our orthotist explained. 

Standing in the orthotics department, tears streamed down my face as they fitted her into the harness. A daunting contraption at first, the Pavlik harness is a series of Velcro straps across the body and legs, designed to hold the hips in an optimum position while the socket correctly forms around the joint.

But Dr Gray says that for children who require treatment, it's often harder for the parent to adjust than the child. "A baby will look and feel, as well as feed and carry differently, in the brace. It can be daunting for mum and dad, however young babies adjust quickly and are not troubled by the treatment."

The first days at home were much harder for me than they were for my daughter. Within 72 hours I'm certain she forgot what her short life was like without the brace and was completely at ease. I, however, was still getting used to nappy changes, breastfeeding and cuddles with this new addition to her body.  

Fast forward two weeks and I can promise that life with a harnessed baby is not too bad at all. Nappy changes occur in record time and newly stabilised hips mean an hour of harness-free time per day to bath, feed and cuddle our girl like any other parent would.

Fumbling my way through this modified early parenthood experience, there are some tips and tricks I've learned to help cope with the slightly different requirements of a baby with DDH:

Allow yourself to grieve the loss of what you hoped your parenting experience would be

You're absolutely entitled to feel a little sad as you come to terms with your new reality, but know that once the shock passes and you adjust to your new 'normal', you will discover new and unexpected ways to enjoy your baby while feeding, cuddling and getting to know each other.  

Information is key

Understanding the treatment plan, longevity and potential outcomes will help manage your expectations. Arm yourself with questions when visiting your doctor or specialists. Ask questions about what your baby should or shouldn't be using during treatment. Is my car seat appropriate? Does my baby carrier support the harness? Is the baby bouncer or play gym at home okay? What clothes can they wear? What processes can I implement at home to make life easier for our family?

Join a support group.

Nothing makes adjusting to your new reality easier than the knowledge you are not alone in your experience. Either online or in person, support groups are an invaluable source of hints and tips, recommendations and general support for when you've had a particularly rough day.

Look for the silver linings

Adjusting to a baby undergoing treatment for DDH is HARD, and whilst it's okay to acknowledge the stress and sometimes sadness that goes along with it, it's important to find the silver linings in your everyday to ensure your baby doesn't 'become the brace.' Did they smile at you today? Did they giggle at their siblings? Did they become content when cuddling with you in a moment of quiet? Take these wins where you can, because they're a reminder that underneath that brace is your beautiful baby who loves you more than anything, and is so grateful that you're loving and nurturing them through this strange and sometimes uncomfortable process of healing.

UPDATE ... 

After 12 weeks of treatment, my little girl is now brace free and very happy with her expanded wardrobe choices and movement capabilities. Early detection and treatment plays an incredibly important role in securing a speedy and successful result for hip dysplasia, so remember to ask your newborn's doctor for a hip check at their post birth physical examination. 

For more information on developmental hip dysplasia, visit healthyhipsauatralia.org.au.