How It Feels: Developmental Dysplasia of the Hip (DDH)

March 5th -11th is Hip Health Week, run by Steps Charity Worldwide to raise awareness of hip instability in 15% of babies born each year. Tonight, Mother Sider Fen shares her account of daughter Ida’s birth and subsequent diagnosis with DDH, and the months that followed…

“OK. I’m going to ask you to take a seat outside, because Ida needs to be referred”. The stomach churning words of the Sonographer who scanned my daughter’s hips in the February of 2016. I struggled to compute and looked up from where I’d been comforting my 4 week old baby girl, Ida, positioned on her side in a little purpose built trough on the same bed where our 12 and 20 week scans had taken place months before. Ida had been born by c-section on account of being breech and, as a result, her hip development needed to be checked as a standard precaution. I glanced across at hubby. His eyes closed and his head tilted forwards; a slightly pained expression spread over his face. He’d not long survived testicular cancer and, by his own admission, was struggling to adjust to that coupled with the loss of control that comes with having your first newborn around. Not only that, but our little girl was already under care at John Radcliffe Hospital in Oxford for a suspected Cranio issue that we’d been warned might result in the need for surgery on her skull when she was just over a year old, but that’s a blog post for another time. Suffice to say that with the added pressure of me only just starting to recover from my aforementioned c-section, the arrival of our first child had been far from smooth.

Hubby lifted his eyes to mine and the look in them forced me to hold back my tears. He didn’t have the capacity to comfort me just now. I needed to find the strength to deal with this for all three of us. A lioness woke within me and gobbled up the Sonographer’s words. “What do you mean?” I asked, standing up and planting my feet firmly on the floor. “Well I don’t want to say too much until you’ve seen the doctor, but you understand the reason for this scan – and of course your c-section – is that baby was breech?” I nodded. “Well, that can sometimes affect baby’s hip development. Let me show you where you can wait.” 

Later that night I found myself standing alone in the corner of our bedroom sobbing uncontrollably – and silently. I’d told hubby I was off to have a shower and left him holding a slumbering Ida. But really I needed to cry and be alone with the thoughts whirling around in my head. Was this my fault? Had my body not given Ida the right space to grow? Did this mean she would have trouble walking? Why was this happening to us? What an awful start to family life! How on earth was this Pavlik harness the doctors wanted Ida to wear (pictures of which I’d been Googling all afternoon) going to fix the deformity? And perhaps the thing that was oddly upsetting me the most: what a shame we wouldn’t be able to use any of the lovely newborn to 3 month outfits I’d bought and been gifted. Over the course of the afternoon, I’d discovered, among many other things, that normal clothes didn’t fit over Pavlik harnesses and that we would either have to use extra large babygros and roll up the arms and legs, or just not button the gusset of her suits and let her nappy constantly be on show.  We were due back at hospital the following day to have the harness fitted and when I look back now, it makes me smile that this was one of my biggest concerns.  

As I stepped into the shower I mulled of over all the other things I’d learned in the last few hours. From being at the hospital, consulting Google, reaching out to my Facebook mum groups and calling a friend whose daughter had been through the same ordeal a few years earlier. 

Firstly I’d discovered that Ida had very likely been in a ‘pike’ position in my womb for a considerable amount of time. Essentially, she was sucking her toes, with her head up under my diaphragm and her bum in my birth canal. This had resulted in her hip sockets not developing into round ‘cups’ over the balls of her hips. Instead, the socket was very shallow; almost flat, and the ball could therefore slip out at any time. A condition called Developmental Dysplasia of the Hip (DDH), which affects 1 or 2 in every 1,000 babies and is apparently more common in firstborn girls. (Just our luck then). What the Pavlik harness would do is keep Ida’s legs in an ‘M’ or ‘froggy’ position and allow that flat piece of bone to grow into a socket over the ball of the hip. It would take approximately 12 weeks. Ingenious really when you think about it. 

And so an obsession with my daughter’s legs consistently being positioned in the shape of an “M” was born. I spent a lot of time on the International Hip Dysplasia Institute website, learning about the types of swaddling, baby wearing and baby paraphernalia that promote healthy hip development. I’d say the best thing I ever bought for taking care if Ida’s hips; was our Connecta baby carrier. It sat her hips in the right position for recovery and I took to wearing her constantly; sometimes for up to 6 hours a day. In fact it was Ida’s DDH that turned me on to all the other benefits to be gained by baby wearing. I occasionally see the odd parent out and about with a front facing carrier where the legs are hanging straight down and I resist the urge to run over and tell them about Hip Dysplasia and healthy hip development. “The pressure that position puts on their hip joints can potentially be very damaging”, I want to say, “get a Connecta or similar!” But I never do of course. Perhaps I can hope instead that this week – Hip Health Week – a campaign launched by Steps Charity Worldwide – is getting the message out there better than I can by running up to random strangers in the street. 

Among the other things that I bought to help me take care of Ida while in her Pavlik harness, were a couple of seats that didn’t restrict her hip position and a car seat where she could sit with her legs splayed as widely as possible. I’m sure friends and family saw me throwing money at the situation and thought I was going a bit over the top, but beware the mummy lioness on her mission to do her utmost for her baby! Nope – the car seat simply had to be swapped!

However, aside from making these changes and notwithstanding my hysterical tears that first night after diagnosis, life in a Pavlik harness became pretty normal for us all fairly quickly. I became extremely grateful to the hospital where Ida was born for catching her condition when they did. Had she been left to start walking without treatment, there’s every chance she’d have ended up in a Spica cast in toddlerhood. Spica casts are rigid, fibreglass affairs; often with a bar between the knees to hold the legs firmly in position and rendering said toddler stationary for months at a time.  The Pavlik harness didn’t seem like such a struggle to deal with after learning how much worse things could have been!

So, we adapted. I learnt to breast feed in the ‘dancer’ position. Ida would sit facing me, straddling one leg of my lap and I’d then lean her across to feed from the opposite breast. We got very good at this position in the end – so much so that coming out of the harness meant a whole new world of learning new positions that worked without it.

I also learned fast that a nappy change needed to involve a nappy bag tied loosely onto each foot prior to nappy removal. This spared the booties of the harness getting soiled and necessitating a trip to the hospital for a fresh harness fitting. An occurrence that thankfully only happened to us twice – once in a fairly dramatic and in hindsight very funny ‘poo all the way up the back’ extravaganza!

Another discovery was the value of a good remedy for Colic. Wearing a Pavlik harness means babies can’t kick their feet effectively to relieve trapped wind. I found a homeopathic remedy called Colic Calm that seemed to work a treat for us.

As for those tears and the one thing that seemed to irrationally upset me more than anything when Ida was fist diagnosed; not being able to dress my precious little girl properly… I found a couple of rather brilliant websites specialising in Pavlik harness (and Spica cast) clothes; not to mention other DDH friendly equipment. Kiek Hip Wear was one of these. Although they are based in the Netherlands, their service was outstanding and extremely comforting to have found in those early days. Another one was Hip Pose – a UK distributor of clothes that work with harnesses. I notice that Slumbersac have now teamed up with these guys, which is a great development in getting the awareness of DDH out there. I should say that I found Pavlik harness clothes to be expensive, so only had a few suits on rotation, but it made all the difference to me to know Ida was properly dressed. All our suits have since been donated back to the hospital in the hope they might comfort other Pavlik harness parents in those first few days after diagnosis. 

As for Ida – her harness came off after 4 months and she was walking normally before she was a year old. She now runs, climbs and jumps completely normally and you’d never know she was actually born without properly functioning hip joints. And that cranio condition I mentioned? Also discharged as nothing to worry about at around a year – but as I say, that’s a story for another time…

Have you had experience of DDH or another hip condition? Were you born with the condition, or was your child? Do leave us a comment below about your experience.

Fen, writing for The Mother Side x

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