This is a post I’ve been drafting in my mind for weeks, unsure of when the right time to jot down our story would be. But dawn, after a horrendous night with an inconsolable little trooper, is seeming to offer the perfect headspace. 6 weeks ago Ace was diagnosed with DDH- Developmental Dysplasia of the Hip, and this week has moved on from the world of double nappies to a Pavlik Harness.
Like my posts on hypnobirthing and tongue ties, this is another that I hope will help a fellow parent or carer the way Jules blog Pondering Parenthood and Caitlyn Neier YouTube channel helped me. There isn’t masses of personal experiences online, and sometimes finding somebody to chat to in the same boat is the little chink of relief you need. So I imagine this will be the first in a series of posts or even part of a DDH diary.
Like those before it, this is a long one, but I wanted to cover as much as possible to start with.
What is DDH?
In simpler terms Developmental Dysplasia of the Hip, often referred to as DDH, is a condition where the ball part of your thigh bone doesn’t sit in the socket properly, leading to it being shallow. This makes the joint less stable and causes disclocation, as the ball looses contact with the socket. It can affect one or both hips and if left untreated can lead to issues walking, extremely painful hips and osteoarthritis by young adulthood. Although not life threatening it could certainly be life changing.
Watching Andy Murray’s heartfelt press conference this week made me really think about how joint pain can change ones chosen path, and how lucky we are that Ace’s DDH has been found at his young age and being treated so swiftly.
Why would a baby have a condition such as DDH?
There is many factors which are thought to lead to a DDH diagnosis, and although it is much more common in girls than boys, Ace ticked many of the boxes.
- First baby
- Breech presentation (either at birth or for significant time during pregnancy)
- Direct family history
- Not much space in the womb
He’s a first baby, was larger than average growing in a smaller than average bump to a mother who had ‘clicky hips’.
Unfortunately I was never asked about my hip health throughout my pregnancy so it never dawned on me that it was hereditary. Clicky hips is a term used so loosely that I didn’t bat an eyelid that it could of been more serious. Or that it could of been the reason why I suffered hip pain and clicking as a teenager.
How is DDH detected?
At 24-48 hours old babies have a mini health check, ours was carried out at hospital before we were discharged but I’m pretty sure a doctor comes to your home if you give birth there or are lucky enough to come home quickly post delivery. Anyway, I’m actually unsure as to whether a hip check is routine, as we requested one due to my suffering of ‘clicky hips’, so this is where Ace’s issue was first detected. It was described as ‘very minor’ but a follow up check would be required.
If a hip examination isn’t carried out in those first few days, it will certainly take place at the GPs during the 6 week check. If a click or clunking sound or dislocation is found you will be referred for further tests.
Our initial follow up appointment consisted of a ultrasound scan. I’ll admit I wasn’t worried in the slightest thinking the biggest issue I’d have that day is if Ace wee’d when the cold gel was applied! Babies are scanned on their side, so a parent is required to assist in holding the little one in place and soothing them when they inevitably become distressed.
There was a lot of ‘umms’ and ‘ahhs’, discussions of numbers and a sigh of relief when they moved from the left onto the right side, before we were told we needed to see a specialist and MUST place Ace in double nappies until then. When I asked how serious it was, I was met with the only reply they could give
‘Your consultant will tell you when you see him’
Our amazing NHS didn’t leave us waiting long and within 48 hours we were offered a cancellation slot and met with Aces consultant within 5 days.
During this appointment we began with another routine ultrasound to check for improvement (amazingly we had some!) before a clinical examination and discussions of Aces treatment plan. Aces scans showed the severity of his DDH in his left hip. He actually breezed the clinical exams, meaning that if scans weren’t brought into play in recent years, his Dysplasia would never of been detected which would of led to ongoing problems. I would love to have known the severity of my own Dysplasia but unfortunately until I reach older age, it’s pretty hard to gage.
At only 6 weeks old he was classed as immature (I know right?!) so it was suggested we have 6 more weeks of double nappies as he’d made such good progress in those few days. By 12 weeks many babies with an initial hip click do not require treatment.
However further treatment, if necessary, could include harnesses, braces, casts and possible surgery.
What are double nappies and how do they work?
Exactly what it says on the tin. Two nappies, the same size, one on top of another. Simple to do and actually saves on the washing because nappy two often catches the poo-nami.
Back in the 1980s when I wore double nappies for 6 months they used reusable terry towelling for the second nappy which is bulkier than a disposable. That’s pretty uncommon it seems these days, but we chose to add a rolled up nappy placed between the thighs in between the two nappies to help keep Aces legs in a frog like position.
The idea of double nappies is to keep the legs wide apart and the ball in the socket joint.
What if double nappies don’t work and what is a Pavlik Harness?
Some NHS trusts or in those who show no immediate improvement in double nappies, start treatment with a Pavlik Harness.
The harness is made of soft fabric and consists of a chest strap with velcro shoulder straps and two boots which connect to the chest piece. Like double nappies they keep the legs in a wide, frog like position but usually at a more severe angle. Again, this is to keep the ball joint within the socket.
This is what Ace was placed in at his second consultant appointment at 12 weeks. I’ll be honest, I thought we’d nailed it with the double nappies. We didn’t shy away from using them, even when he’d scream at each wet nappy for the first few weeks, and he seemed to even hold his legs in frog position when the nappies were whipped off during changes and bath time. Surely with such improvement in a few days after 6 weeks he’d be right as rain.
Aces scans showed no improvement.
So he’ll now wear the harness for 23.5 hours a day for as long as feasible, with weekly check ups to readjust the harness and to scan for signs of improvement. The recommended treatment time is 3-4 months, with some children out in as little as 3-6 weeks but for some others much longer and still needing further treatment afterwards. So at the moment it’s on for as long as a piece of string.
How does a baby AND PARENT react to wearing a Pavlik Harness?
Every blog, Instagram post and DDH parent I’ve spoken to has insisted ‘it’s worse for the parents than the baby’ and for the bulk that’s true.
I’ll be honest, 6 weeks ago armed with words and google I spent a few days in a very dark and distraught headspace. Upset because I didn’t want my son to look different, almost grieving for the abundance of beautiful clothes hung in his wardrobe he may never wear and feeling weighed down by the guilt that I’ve caused this alongside the knowledge that I had nothing really to cry about and our situation didn’t deserve tears. It’s not life threatening and it was NOTHING compared to what some of my closest had gone through. If this was the hand we’ve been dealt, it’s not a bad hand at all.
Which is another reason why it’s good to talk to others or read someone else’s experience. At least one person will totally understand how you are feeling and ease the guilt of feeling your hurt.
We are now entering the tail end of our first harness week and as a whole Ace has coped well. We’ve had the screams and tears which disappear the moment the harness is removed, the frustrated nights where he can’t stretch out and the look of horror on his little face when he realises his half hour daily break is over, but it’s better now than in years to come. At least he won’t remember this, we tell ourselves, and at least he’s now old enough to have the relief of a little calpol when the muscle strain or sore skin becomes too much. It’s a small price to pay for hip health.
If your little one is awaiting a DDH diagnosis or you just want to talk to someone going through the same, please don’t hesitate to drop me a message on Instagram @flicks_and_red_lips
I joined the Hip Dysplasia in babies Facebook group which has been the best support for any questions you face in those midnight hours.
Steps charity is also a wonderful resource filled with information on hip Dysplasia and treatments.