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Hip dysplasia: surviving and thriving

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NSM Justine Atherton had two daughters born with hip dysplasia. This is her story…

My firstborn was two days old when she was diagnosed with hip dysplasia. The doctors did the standard newborn hip examination, and felt the tell-tale “clunk”.

Until that day I had never heard of developmental dysplasia of the hip (DDH). I knew that I was born with “clicky hips”, but the condition had never affected me and I’d never given it any thought.

The doctors explained that DDH is an abnormal development of the hip joint. The hip joint fits together like an egg in an egg cup. DDH means the femur isn’t fitting snuggly in the hip, it is loose or, in the worst case, dislocated.

To correct the abnormality my daughter was put into a Pavlik Harness. She was four days old. This harness aims to hold the femur in the hip joint to stimulate bone growth and tighten the ligaments.

On my tiny newborn the harness looked huge. It engulfed her torso and swallowed her legs. My daughter wore this harness 24 hours a day. She couldn’t have a bath. She didn’t fit the newborn clothes our friends and family had given us.

We held her tight, and got on with adjusting to life as parents. The seemingly endless cycle of feeding, changing nappies and searching for sleep. All the while counting the days until the specialist appointment at six weeks.

We hoped for the best, but somehow I knew it would be bad news.

My fear was confirmed when I saw the ultrasound; my daughter’s right hip was dislocated. My heart sank, but I didn’t cry. I couldn’t because I knew my little girl needed my strength.

The harness was thrown in the dustbin, and we moved to plan B. At three months of age my baby was scheduled for surgery. Her femur would be placed in the hip socket and, to keep it in place, she would be wrapped in a plaster cast. She would wear this “spica” cast for three months while we waited for bone growth. The cast would cover her body from her armpits to her ankles, with just a rectangular hole for toileting.

I was consumed with questions. Would the operation hurt? Could I breastfeed? How would I carry her, dress her, change her nappy? Would she fit in her car seat or her pram?

I felt like I had no-one to ask. No-one I knew had been through this. I turned to Google and started reading.

What I learnt is that DDH is more common in babies that are first born, female, born breech, and who have a family history of the condition. It is treatable, but early diagnosis is important as treatment can then, usually, be less invasive.

We went to The Children’s Hospital at Westmead for the surgery. We were yet to give our baby Panadol and here she was going under a general anaesthetic.

What I remember most about that day is how my daughter screamed. I heard her wake up from the waiting room. I heard her being wheeled down the corridor and into recovery. She didn’t take a breath. She screamed for three hours and then, exhausted, fell asleep in my arms.

I could tell you how we adjusted the car seat and pram to accommodate the plaster, how my daughter slept propped up on pillows, how we tried to prevent nappy leaks, and how they leaked anyway. I could tell you about the nights I crawled into bed exhausted, overwhelmed and crying.

But, what I remember most is my little girl’s resilience. How she tried time and again to rollover, how she smiled cheerfully at the curious strangers who asked what was wrong, her delight when she finally discovered her legs and toes. In a Sydney summer the plaster must have been itchy, hot and uncomfortable, but it was all she knew.

My daughter’s cast was cut-off when she was six months old. She was fitted with another brace, which she wore 23 hours a day. We rejoiced because we had one magical hour every day for bath time and play time. At nine months of age the brace came off for good.

Two years later my second child, also a girl, was born with hip dysplasia (shown below in her Pavlik Harness). This time the abnormality was corrected in three months with the harness.

Hip Dysplasia

My eldest will continue to see the doctors until she is eight or nine. But for now she is a typical, vibrant, unstoppable three year old. She climbs, jumps, skips and runs, and I celebrate every step.

Treatment for hip dysplasia varies depending on the severity of the condition and the age at diagnosis. Information is available from the International Hip Dysplasia Institute. If you are concerned about your child speak to your doctor or early childhood nurse.

Have any of your children had hip dysplasia? If so, how did you manage it? And are any of you going through it now? Share your thoughts and stories in the comments section below.

More on child health matters…

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