Bronwyn’s DDH Story

 

When people meet Addelyn, the first thing they comment on is her beaming smile. It hasn’t faded despite her past four months. 

Adde was 6.5 months old when, while handling her, we became conscious of a clunking sound and feeling. We thought we were imagining it, especially considering she was given the all clear at her recent 6 month check-up, and every routine check before that. Not convinced, I had her hips specifically checked again. We were told everything was fine, but continued to worry with every increasing clunk. Trust your instinct. I ended up driving four hours north to where my father is a GP, and had him test her hips. Both sides dislocated, easily. Adde was sent for X-rays.

The night I had the X-rays taken, my dad called and soberly explained to us the results. We were sent to an orthopaedic surgeon who confirmed that Adde had a “very severe” case of bilateral hip dysplasia, and no signs of femoral head growth. Meanwhile, the surgeon handed me a routine X-ray form for my 2-year-old son, to make sure he also wasn’t another case of undiagnosed developmental dysplasia of the hip (DDH). I took him for his X-ray the same day, and again, a day later we received more unwelcome news. While my son doesn’t have DDH, the precautionary scan revealed Perthes Disease, meaning his left femoral head is effectively disintegrating. Within two days, we had discovered both our children were harbouring hidden hip issues. We were - and continue to - face a long road of treatment for each (on the bright side, our surgeon treats both conditions!)

Hip Dysplasia was never a red flag for us - we have no family history, Adde wasn’t breech or transverse, and she wasn’t a first born. The only contributing factor - females are four times more likely to have DDH than males.

At 7.5 months of age, Adde emerged from closed reduction surgery in a nipple-to-toe purple spica cast, which she remained in for almost three months, over our hot Aussie summer. She slept very poorly during these months, waking every 90 minutes throughout the night. Although she continued to smile and take it all in her stride, as parents, our whole lives changed. We couldn’t bathe her for the whole duration, and our biggest challenge was keeping her cool, comfortable and her mind stimulated. There’s no manual for caring for a spica baby.

It was a glorious day when her heavy (stinky!) cast was removed and she was transferred to a Denis Browne Bar (DBB) brace, which she’ll remain in for at least 6 months. Her surgeon says her progress has been slower than hoped, due to her age of diagnosis. We are 2.5 months into the DBB, and she has moved from severe to moderate, so progress is heading in the right direct, albeit slow. But we are so thankful our cast days are over, and we can hug our little girl again, without 2kg of plaster and fibreglass between us.

While we wouldn’t wish our story on others, we have grown enormously over the past few months. Although our daughter has been temporarily disabled in her cast, we have a newfound admiration for parents of children who endure far worse than us, and many on a permanent basis. And while Adde’s resilience continues to grow, we have hopefully become more compassionate people for the experience.

 

HHA Comments:

We can't get enough of Adde's smile nor your positive outlook Bronwyn. Each DDH journey is different.Other DDH Stories are available here.

We'd love to share your experience with hip dysplasia. Please email you story and a photo or three to info@healthyhipsaustralia.org.au.

Help Others...

Would you like to help make the DDH journey that bit easier parents and children alike? Donate to HHA today to help increase the support services we can offer to the Australian DDH community.

Donate Today

We are an endorsed DGR recipient. Donations over $2 are tax deductible.

You Are Not Alone

Want to meet up with a family nearby, or chat with families from the same hospital/specialist? Join the local buddy network today.

Being able to meet up face-to-face with others impacted by hip dysplasia, can make it easier to realise you are not alone on your hip dysplasia journey. Maybe no one in your family, or friendship group, knows what it is like to face a hip dysplasia diagnosis. Perhaps you don't want to burden them with your 'new' reality (or ongoing reality); as they too have their own health conditions.

Join

 

Written: April 2018

Disclaimer

This information is intended to support, not replace, discussion with your doctor or healthcare professionals. Every effort is made to ensure this information is up to date, accurate and easy to understand. Healthy Hips Australia accepts no responsibility for any inaccuracies, information perceived as misleading. This can be reproduce with acknowledgement to Healthy Hips Australia. Handouts are available to download free of charge at www.healthyhipsaustralia.org.au

Comments are closed.