Saturday 2 May 2020

Harness Life

Amelia passed all of her hip tests as a newborn. Her manual manipulations were all fine, no clicks, no family history of hip dysplasia. When she was 6 weeks old, we went for our paediatric check and while we were there, we got to chatting about how Claire had so many issues developmentally over the years - as I was worried if they would also present with baby.
The paed queried how Claire's hip ultrasound was, and I was surprised - we'd never had one for her. He was really shocked that she'd never had any sort of investigation into her hips over the years, as an ultrasound as an infant, or as an x-ray as she grew up and was unable to weight bear. As a precaution, he recommended that we have Amelia scanned, just to rule out any hip issues that might be lurking.

A week later, at just shy of 7 weeks old, Amelia was scanned. She screamed her pretty little head off during the ultrasound - not because it hurt, but because she wasn't a fan of being restrained. She has been feisty from the get-go, this one! The ultrasound tech wasn't having much luck, and called in another pair of hands. Little did I know, she'd called in the paediatric specialist doctor, as she'd actually seen something concerning. To my surprise, he DID find issues with her hips. They were not dislocated, but were showing signs of dysplasia: when manipulating her legs up and down, the ball of her hip moved in and out of the socket. This is an immaturity factor, as they should be firmly in place by 6 weeks of age and he recommended we revisit our paediatrician.
I couldn't get in to see him for another few weeks, so Amelia was 10 weeks old at this point. He attempted to get me into a private physiotherapist for more guidance, however when I made a few phone calls, I quickly realised that they would assess her but then refer on to an orthopaedic surgeon if they were concerned. I decided to skip this altogether, and had my GP refer me to the Children's Hospital at Westmead. They rang me a week later and we had an appointment arranged soon after that.

We met with a junior doctor, who assessed Amelia and then referred us onto a senior doctor. This professor felt that one hip had improved, but that he was unsure with the other - so he brought in a portable ultrasound machine to confirm for himself. One was better, the other was still very lax. His recommendation was for Amelia to go immediately into a Rhino Harness, but for night sleeps only. This treatment plan threw hubby and I for a loop, as we were expecting to be monitored over the coming weeks, but not for her to require harnessing. We went straight from the doctor's rooms to the orthopaedic unit, where Amelia was fitted for her new brace. I'm not going to lie, I was pretty darned emotional about it all. She was still so tiny, and we were manipulating her hips into this awful looking position - how would she cope with it all? They warned us that sleep may be impacted initially (but she was always a rubbish sleeper anyway, so it couldn't get any worse... could it?) but to just ride it out. They also encouraged us to keep long, firm fitting pants on her, and to keep an eye out for any chafing or discomfort which may indicate that her harness would need refitting.
She's been in it for over 6 weeks now. It's been pretty challenging. She wakes regularly during the night, and it's quite difficult to hold her comfortably for breastfeeds. We had to find special swaddles and sleeping bags that would fit her at night time, as her legs are splayed very wide.

We were supposed to have a repeat ultrasound as well as a doctor's appointment for review this week, but thanks to the Covid crisis, it was cancelled. Instead, the ultrasound has been pushed back to the end of May, and the doctor's consult afterwards will now be done via phone appointment. In the meantime, we're still bracing her each night, and hoping that it's helping her hips stay in the right place. I'm grateful that we've avoided having to be wearing it all day long at this point, fingers crossed it'll only be another few months of having it at all.

In short - get your baby's hips checked at every appointment. Dysplasia is developmental, meaning it can present as your baby ages - the earlier it's picked up, the better the outcome. I'll keep you posted on how Amelia's hips are developing over the coming months.

Here's hoping for some better sleep at some point in the near future!

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