The impact of late diagnosis on hip dysplasia treatment

"I had no idea what to expect…spica cast! What was that?"

This is the hip journey of my oldest daughter, Ashlea. I have two daughters, Ashlea and Ava, and they both have their own hip Journeys. Ava’s is a completely different and quicker journey.

Sisters Ashlea and Ava showing off the braces they both once wore

Ashlea and Ava showing off the braces they both once wore

Ashlea was born 9 days overdue, her birth was everything a woman wished a birth would be. It was an amazing. She weighed in at 7lb4oz. She did have complications from bathing in and swallowing meconium. But she was a lucky baby girl who came home at 9 days old. She was perfect! After a few months I began to notice Ashlea’s pant legs were shorter on her left side. I didn’t really take too much notice. She was a happy baby, even with reflux that had her projectile vomiting after every feed. She was a baby that didn’t roll and didn’t learn to crawl. By 13 months old Ashlea had learn to bottom scoot, she did this with her left leg straight out in front of her. It was now that I was getting worried that there was something wrong. I ended up making an appointment for her to see a pediatrician. He took one look at her and said she was fine. I didn’t agree. So much so, I booked in to see a different pediatrician. Again, she was perfect, apart from a slight leg length descrepancy. “Everyone has a longer leg!” I did agree, but not to the degree that Ashlea had. After talking to her father about her head shape (flat on one side from sleeping on her back) we decided to make another appointment with yet another paediatrician. Finally, when he put Ashlea’s legs together, he saw the length discrepancy.

...my mothers intuition had finally paid off...

He didn’t say much but sent us to see an orthopaedic surgeon. Finally someone agreed with me. There was a length discrepancy that needed attention. We went to the orthopaedic surgeon and he sent us straight down the hall for an X-ray. I will admit, I was not expecting to hear or see what we heard or saw when he placed Ashlea’s X-ray up on the lighted screen. There it was. My sweet girl, only a toddler, only 18 months old had a completely dislocated left hip! Over the last 18 months, Ashlea passed her maternal child health nurse appointments with flying colours. The times she went to gp’s I did get them to check her legs and it took three paediatricians to realise something wasn’t right and send us to a specialist. I didn’t know what to think, apart from happiness, that my mothers intuition had finally paid off. We were told Ashlea needed to have an open reduction. This was to happen 3 weeks after she was diagnosed. During these 3 weeks, Ashlea learnt to walk. She has a cute limp and fell a lot. But she accomplished something I thought she never would. She walked. Then 2 weeks later, she went in for her first of many surgeries.

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I had no idea what to expect. Her surgeon wasn’t the best at informing parents what he was going to do their precious children. I knew she was going to come out in a spica cast. "Spica cast! What was that?" The internet was my best friend and worst nightmare at the same time. Ashlea and I spent four nights in hospital, learning to care for Ashlea in her new appendage. The first time I saw her in recovery stuck in her plaster cast I cried. At that time I didn’t know how we were going to get through this; I had just found out I was expecting my second child. I have touch and go pregnancies. I was told not to lift more than 10kg…..My Ashlea now in her spica cast weighed 20kg. I can’t not lift my daughter at the best of times, but now she relied on me even more. I just got on with it and crossed my fingers that my pregnancy would be okay. Ashlea was such a good little girl; she adapted so quickly and spent only 6-weeks in her spica (looking back now, I believe she should have been in it longer). It only took her 1 week to sleep through the night again. I started turning her every 3-4 hours during the night, but she could only sleep on her back. While on her tummy she would vomit (reflux); I spoke to her surgeon and they were happy with us to leave her on her back as long as she was happy and not uncomfortable.

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On the day of her spica coming off (second surgery, even though no operation was needed) she was placed in a rhino brace. It was so good seeing her little legs again and giving her a bath. Her skin was really good. Only a few small patches of dry skin. It wasn’t long before Ashlea realised she could move around in her brace. She began bottom scooting again and after 3 months in the rhino, she learnt to walk, again for the second time. The brace didn’t keep her back. She went to the park, played with her counsins and was a happy toddler. After 6-months in the rhino brace full time (23 hours a day) she graduated to part-time. Ashlea now only had to wear her brace while asleep. With her new found freedom, she learned so much more. Climbing stairs, running, climbing onto the couch and lots lots more. By this stage, Ashlea became a big sister. One year after being placed in the rhino brace, Ashlea reached another milestone; no more brace! Ashlea’s hips were going great. I thought nothing else would need to be done to her hips.

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At the age of four, on one of her many regular visits to the Royal Children's Hospital (RCH) in Melbourne (I transferred her there once her sister was found to have hip dysplasia as well), it was found that her hip was nearly dislocated again. So she went in for her third surgery; this was her first femoral osteotomy. This surgery was awful as was the recovery; we stayed four nights in hospital. Ashlea was wheelchair bound for 6-weeks. Once we were home and back to normal, Ashlea adapted well. Zipping around in her new wheels at home, kinder, childcare and while out and about. She leaned to accept the stares from other kids and adults alike. Even though it did hurt her. After 6 weeks Ashlea was given the okay to learn to walk again, for the third time in her four short years. A year later Ashlea had the hardware removed and recovered quickly. She began to suffer pain on what seemed to be a daily basis. Her surgeon said it was to be expected with growing and the surgeries she had. It kept her from being included in sports and the like but she was okay with this. The next year was a good year with no hiccups. She aced her specialist appointments and X-rays with flying colours.

FullSizeRender Then when Ashlea was seven, one of her usual 6-month X-rays revealed that her hip wasn’t in the optimal position again so it was back into surgery for her second femoral osteotomy. The recovery was horrid, with another 3-night stay at the RCH. Ashlea had built up an adversion to nurses. Whenever a nurse came in she believed they were there to hurt her. So as you could imagine, it wasn’t a pleasant stay. But once we were home again, in her beloved wheelchair, she was fine. She spent longer in the wheelchair this time; 12- weeks over christmas and the summer holidays. We still did family trips to the beach and made memories. Again, one year later at the age of eight it was time for the hardware to be removed.

FullSizeRenderWe were getting use to this now and knew what to expect so after two hours in surgery and no word from her surgeon I became worried. Three hours came and went. What felt like forever was four hours and we finally saw her surgeon. I could tell by his face that surgery didn’t go as planned. Instead of the hardware being removed, Ashlea had yet another femoral osteotomy, her third. This time the hardware was a lot bigger and stronger. So much so that she didn’t need a wheelchair for as long. She also upgraded to her first set of crutches. Ashlea was proud to say the least. She mastered the crutches better at the age of eight than I did at the age of sixteen when I was on them. This time her recovery from surgery was a lot easier. I’m not sure if it was because of her age and getting older and more understanding of everything. What ever it was, I was grateful for.

FullSizeRenderAt the age of nine, 9 months after her last surgery, the hardware was scheduled to be removed. This time it was only an overnight stay. Ashlea did so well and was up and walking 3 hours after coming out of recovery but she still came out of hospital with her second set of crutches. This was more for safety reasons at school and while out and about; while the bone healed. It was during this surgery that her surgeon decided that no matter what he did, Ashlea’s cartalidge wouldn’t form bone to form a sufficient ‘roof’ to keep her femoral head nice and tight where it should be.

We were told that yet another surgery will need to be performed, her first pelvic osteotomy, but when, he does not know. He needs to avoid her growth plates. If we wait until the age of thirteen to fifteen, Ashlea's growth plates will be closed and surgery will be a little easier. As Ashlea is still in pain, her surgeon ordered an MRI which revealed that not only does Ashlea have a shallow acetabulum, but she now also has a severe impingement and torn labrum. We are yet to hear where we will go from here. Her MRI findings were 3 weeks ago. and her next appointment isn’t until early February 2016; on her tenth birthday.

The one thing Ashlea has taught me is, life goes on, and that she is one tough cookie!

 

 

Help stop increasing late diagnosed DDH in Australia:

Healthy Hips Australia want hip dysplasia information in every maternity hospital, antenatal education class, GP practice, child/maternal health nurse clinic and children's hospital in Australia. All parents need to know about this common condition that is affecting up to 1 in 50 babies in Australia.

Please help us reach our goal:

 

Note from Healthy Hips Australia:  Ashlea's journey highlights how late diagnosis impacts hip dysplasia treatment. Thanks to Ashlea and her mum Lorie for sharing their journey, so far, with us. Whilst not all hip dysplasia treatment is this complicated there are still too many children diagnosed late. Early diagnosis yields the most favourable outcome.

For more information:

signs and symptoms

preventable risk factor

Written: February 2016, updated October 2016.

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

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