Hip Dysplasia – A Mother’s Perspective

Agata’s Story

“When people asked me what sex I was hoping for during pregnancy, my response was always straightforward. I wanted “healthy”.

Since the birth of my baby girl six weeks ago I’ve been surprised with the number of (often unknown to me) people who have commented that “you’ve got your girl now”. The opinionated side of me comes very close to offering them an explanation of the mechanics of how babies work and clarifying that people who go on to have multiple children don’t actually get to determine the gender of their child and that anyone with one or more kids needs to be pretty accepting of the next child likely to be either sex. Unless of course you know different, in which case I’d be keen to see what your outcome is at the roulette table.

I saw myself the Mum of three boys as easily as I did the Mum attending ballet lessons, and given I was now “high maternal age” (they no longer use geriatric which is a relief to my self esteem) my greatest fear was to end up with challenges in parenting I may not have been able to cope with.

“well, time to meet the little human who has been living inside you” 

Six weeks ago beautiful Sophie Elizabeth joined us after a quick 1.5 hour labour and we were literally tickled pink to have her join us. I still recall the delightful way my Obstetrician introduced me to her, passing her across with the words “well, time to meet the little human who has been living inside you” – allowing me to discover for myself that the little human was a baby girl. After the initial doting and gorgeous skin to skin time, Sophie had her first feed and the parenting of a newborn came flooding back to me. Our paediatrician came into the room and undertook his checks all the while commenting that by the looks of her he was only really here to pay her lots of compliments, reassuring me that the one thing I’d been hoping for was given to me. Hallelujah!

A suspected click hip

Our paed did comment though that she could have a suspected clicky hip and would need a ultrasound at 6 weeks. I had been in a brace with developmental dysplasia of the hip (DDH) as a baby myself, but given I approach everything in life with paranoia and a sense of worry, I reminded myself that after having the two boys rather close together this would be the baby that I thoroughly enjoyed and not to spend my days stressing and worrying.

Six delightful weeks passed where I got to spend my days gazing at the gorgeous miss Sophie and I was rather proud of myself for not fretting or predicting the outcome of her upcoming scan. So when I got that ultrasound and the sonographer (who was not able to pass on the outcome then and there) made it rather clear that one hip in particular was very loose and she would need follow up quickly (before going overseas as was planned in one weeks time). I was gobsmacked.

“So many times in life I had cursed myself for stressing and overthinking something that never eventuated and I let my guard down just once and I get knocked for six. Damn.”

I was shocked like many parents on this day. What followed was the need to decide on whether to go privately of public. Many parents end up finding their baby is braced on the same day as the diagnosis but as we’ve decided to have Sophie’s DDH treated via Perth Children’s Hospital in the public system we had a 6 day wait until the clinic that would give us our harness and detailed diagnosis and prognosis.

“This is what I wrote on my first few days…”

I am very fortunate in this way that I get to spend time cuddling her harness free and enjoying her raw beauty. In some ways though it’s been a very trying few days as we are left speculating about the changes we will need to make and the practical hurdles we will have to deal with. The more time I have the more I’m thinking, or overthinking the emotional and practical impacts of a DDH diagnosis. As I heard it described today by a DDH Mum… “-it’s not cancer, but…”. Is pretty accurate. To assume nothing will change is a naivety that I just can’t live with.

Since then, life in the world of DDH has been a journey of ups and downs.

Parents spend their time crossing fingers, speculating and praying that the next scan or x-ray gives the all clear. I’ve learned that everyone’s health journey is vastly different and the lack of clarity on prognosis is a difficult pill to swallow. When the brace gets fitted, all you want answered is “for how long?” – a question no one knows the exact answer to. The babies with DDH adapt quicker than the parents, But it still leaves mummas and daddas with more sleepless nights than they are already entitled to. We had Sophie braced from six weeks to six months and we adapted. We dealt with all the questions and comments from strangers, we appropriated wardrobes and bathing routines. We got new prams, high chairs and car seats. Life went on. The part I missed the most was the squishy baby I wanted to snuggle was all harnessed up.

At six months we were told all was good. Woo hoo! Harness free! I enjoyed those three months of having a healthy baby, but at nine months baby Sophie’s hips has regressed and we are back in a brace. The twelve month checkup showed no improvement. So our bracing journey continues for now. It’s not clear whether she will benefit from the brace or not and that lack of clarity is incredibly frustrating.

I hope that by the time Sophie is an adult and ready to possibly have kids of her own that the world of DDH is a much clearer one and that the path to recovery is straightforward.

The social media communities that have been established and the cottage industries that support our babies clothing and sleepwear have been amazing. And the vision of those like Sarah at Healthy Hips Australia have made our ongoing journey one that could have been so much harder.

Story sent to Healthy Hips Australia 21 March 2019.

Read More Stories

Other hip dysplasia experiences can be read here, along with more stories available here.

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Keep The Stories & Support Coming

I started Healthy Hips Australia 4 years ago after finding myself overwhelmed and uninformed by my own experience of having both my daughter’s diagnosed with hip dysplasia. We are a volunteer run health promotion charity reliant on community support to keep this invaluable service available. X Sarah (Healthy Hips Founder)

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