To ask for your experiences with hip Dysplasia

[Blondiecub0109]

Posting here for traffic.

DS 6 weeks is as delivered via ELCS due to breech. Click heard during paed. Check on discharge. US performed today.

Both hips are immature, one was scored 57 angle and the other one I’m not sure it was worse but above 50. Comments about the bony roof being deficit?

We’ve to go back next week to see consultant as ‘it wasn’t serious enough to be seen today’.

Is a Pavlik Harness inevitable? Is there ever a wait and see approach?

The radiographer mentioned something about a plastic nappy. I’ve also read about double nappy- Ing. We cloth nappy anyway, Basically, is there anything to try before the harness?

It was a long journey to have this precious baby and obviously I want him to be happy healthy and not have issues now or in the future.

But I’m now panicking that my mat leave will be another string of hospital appts and caring for a child in a harness when I’d planned to do swimming lessons, have a family holiday etc.

Please share your experiences in particular positive harness stories

My mum & I both had DDH but it was never screened for back when we were born. Outcomes for us was my mum always walked pigeon-toed & still does, I did ballet (rather than a possibility of surgery) to remind me to put my toes outwards. When my son & daughter were born (2011 & 2015) it was standard procedure to screen hips if there was a family history. My son was fine but my daughter had DDH too - luckily she was just recommended double-nappies - we had to dress her as usual for bed, but then add another nappy padded out with a folded muslin cloth inside around her sleepsuit to force her hips outwards. She only had to wear this at night for 6 weeks (age 6-12 weeks old) & that sorted them out. Also told to avoid anything like baby bouncers that separated the legs. She's now 4 and her hips are fine, so if it's only mild you may not need a harness.

A friend of mine's daughter had this issue and was in a harness (can't remember for how long, but it would only have been a few months) - as soon as she was out of the harness she was very active, crawling at 7 months, walking at 11 months and very healthy overall. It didn't seem to hold her back at all.

My dd wore a harness for the 1st 3 months of her life due to her hip sockets not forming. She's nearly 15 now and no lasting effects.
I've seen cases where it's been missed at birth meaning the child has to go through surgery and be in full cast for months.
Id take the harness, baby won't know any different

DD wore a harness. No lasting effects here. Yes it was upsetting and hard to cuddle her etc but I vividly remember the consultant saying to me you will forget how awful this is and it will be a distant memory one day. I thought he was insane but he was right, I hardly remember she had the harness.

My daughter had the harness. It was horrendous at the time but very short lived. It’ll feel like crap for you when he has it on but one day in a few years, someone will ask you how his hips are and it’ll be such a distant memory, you won’t even know what they’re talking about.

Hi

I don't have any experience of the harness etc in childhood however I am currently recovering from my second hip surgery due to missed dysplasia in childhood.
After working as a chef for 5 years it took it toal and everyday was agony.
I was finally referred after a very long wait and had to fly to London (from NI) to have PAO surgery.
It is a brutal surgery with a lengthy recovery period.

I only tell you this to encourage you to follow the instruction of any consultants etc now so as to avoid any issues in the future.

I know it just be horrible to see your child having to wear a harness etc and not be able to do as much as planned.

My DD had a harness for 4 months. It felt inevitable as I had DDH - missed til I was 2, full cast, surgeries and recently a hip replacement. The harness was not as bad as I thought and she was the very cheeriest of cheery babies. Good luck to you both

Whatever you do, get it fixed now! Mine wasn't spotted until me late 20s, and I had major surgery to correct it. Still will never be perfect.

Hi there,

My DD has hip dysplasia, she arrived 5 weeks early and was breech. Because of her delivery she was checked straight away and diagnosed. The hospital didn't want to do anything initially as she was prem.

When she was 8 weeks old she was put into a palvivk harness and she was in it for around 4 months. During this time we weren't allowed to take the harness off at all and had to take her to the hospital every 2 weeks for a bath. I do understand that this isn't the same under every hospital though.

Unfortunately for us the palvik harness didn't fully correct her hip and she had to be put into spica cast for 3 months. This seems to have done the trick though.

She was late to crawl and us only now starting to walk at 18 months. But she is a happily little soul.

There is a great support group on Facebook, I had to actually join Facebook! It's called the steps group. And marks and Spencer's have just started to sell a range of adaptable clothes. Although we dressed DD in a size too large baby grows and she was fine.

This time last year I was crying hysterically because I was so upset that there was something "not right" with my baby, now you wouldn't have known there is anything different about her.

That's just an overview of our experience. Happy to talk to you more if you have questions.

Thanks all for taking the time to reply. I have absolutely every intention of following consultants advice. I babysat as a teen for a family whose daughter ended up in a spica cast so I intend to get it fixed as early and we’ll as possible

Isis1981uk - thanks in particular, all the literature I’ve found just goes straight to Pavlik Harness, hoping there’s maybe a solution like yours, if it is the harness so be it.

I understand the feeling that in future we’ll look back and not even remember We had 3 years of fertility tests, ivf to have him but that already seems distant.

After ivf, 2 MCs, multiple episodes of early bleeding, extra growth scan, breech, ECV, ELCS, I would just.like.a.break.from.the.hospital.

I have a tendency to catastrophe thinking so I’m already thinking, will this mean the end if BF, how will we bond with him, how will I dress him etc l. Just need to wait and see the outcome next week. Thanks again

My 2 year old has hip dysplasia. Was discovered at birth and put in a pavlik harness at 2 weeks old. She was in it for 24 weeks in total. Full time for 10 weeks and then a weaning out period for 14 weeks. She went into 3-6 months clothes at 2 weeks old as she was so wide. Her angles were 29 degrees in 1 hip with total dislocation and 37 degrees in the other hip. So far the pavlik has done the trick and we have check ups once a year. Before this it was every 3 months. It is the best thing to just have a harness as it is worth a shot at it working.

I should of added that hip angle should be above 60 degrees so your child doesn't have a severe case by the sounds of it.

We had to go weekly to the hospital for ultrasounds and harness adjustments. This was for 6 months so it was a slog but only once a week. The worst thing was not being able to bath her for 10 weeks. Just wet wipe washes.

You will get used to it, your baby wont remember it at all. I promise.

Also I meant to say - I was absolutely able to breastfeed. As she got older I sort of sat her astride my leg and leant her forward as she was held upright by the harness. I do remember dressing being a bit disappointing as we couldn't use all the lovely clothes that were bought but it was a small thing really. Washing under the harness can be interesting!

My now 12 year old had a harness for about 4 months and it just took a bit of adapting.

No problems breast feeding or bonding at all just need to find the right position with pillow for support etc to begin with. I fed her out and about as well with no issues.

We dressed her in a vest and a larger size babygro most of the time. You can use leg warmers rather than trousers.

I don't remember having weekly visits, maybe fortnightly and only a few scans but that might have changed and will depend on your consultant.

She has had no further problems and you definitely forget about it!

Hi OP, my 5 month old DD (also much longed for ivf baby) is currently in week 7 of an 8 week stint in a pavlik harness - and it’s really fine, you will be ok!

In terms of ‘wait and see’, we had a first scan which showed shallow sockets and we had a follow up scan a month later to see if it had self-corrected. It had, but not enough for them to be satisfied so she was put in a harness for 8 weeks (left hip 60 so borderline, right hip 70). In terms of helping it naturally, just make sure her legs are
in the froggy position as much as possible, so use a sling or hip-friendly carrier and be careful if you’re swaddling her at night. We were given no guidance whatsoever in between scans and it turned out we’d been using a swaddle brand which wasn’t deemed hip friendly .

If she does need the harness, it’s tough at first but they adjust soooo quickly (as our consultant said, they’re not born wearing a nappy but they get used to it.

Agree with others about the M&S clothing range and upsizing babygrows - cheaper ones usually have more stretch across the wide legs. Also dresses with cut off tights and leg warmers.

There’s another brilliant facebook group called Hip Dysplasia in Babies, as well as the Steps Charity page, I’d recommend joining now as there’s lots of advice (don’t get spooked by the more serious cases tho, you’ve been caught early so easily treatable).

In our NHS trust we go every 2 weeks for a harness check but we can’t bath her, just a quick wash while we’re in the doctors office. I’ve got into the routine of giving her a top to toe wash every morning while I get her dressed with lots of silly songs and games, which I actually really enjoy now.

I can give lots of other advice but won’t spam you with it now - feel free to pm me if you want to chat more, and good luck. I understand totally how you feel about not wanting any more hospital appointments, but I just kept telling myself she was worth all the stress and upset! xxx

Ps, are you swaddling her at night? If so make sure she’s in a hip-friendly swaddle that allows her legs to lie in a froggy shape.

Argh I meant to cut that last bit, must proofread before posting ...

My eldest DD was breech and had both hips around 57, so was classed as immature hips rather than full displasia.

We cloth nappied (or I would put a cloth nappy over a disposable when we were on holiday). I also carried her in a hip friendly sling (not a baby bjorn style) as much as possible as I was told not to use the bassinet attachment on the pram. When she was in the car seat I made sure to flop her knees out and tuck her feet up. Finally I was told never to lift from the feet when nappy changing. Basically spend as much time in a froggy leg position as possible and never push her legs straight.

It took a while but we did avoid a harness. She was late to walk and was only discharged from the hospital once she was walking.

My dd was in a pavlik harness. Tough going at the time but would do it without doubt again. The treatments once they get 6+ months are several times worse and more unpleasant.

I was born with it and my mum was told to double Terry nappy me.

Unfortunately she knows nothing except I was born with clicky hips, so I can't tell the docs anything when I try and explain the issues I've had since I was in my early teens.

My daughter was born with bilateral hip dislocation. 6 months in pavlik harness and she’s now 15 and has had no further issues.

Thanks all.

I didn’t know about the not lifting from the feet nor the positioning in the pram so I’ll work on those.

DH has corrected me that the angles were 53 and 52, the 57 was the cut off point for referral. Sonographers did describe them as immature.

One sonographers uttered sometime about a plastic nappy and the other uttered something about a splint, assume she meant in the harness. I have always known it was a possibility about his hips but the obstetrician and the paedetrician in the post natal ward both mentioned ‘oh they fix it with splints nowadays’ really flippant like it’s something one puts on your sprained ankle! I just wish we’d been seen today instead of waiting for next week but we were told it wasn’t serious enough to be seen today (as it’s not dislocatible)

I did know about the swaddle - we have four different hip healthy swaddles and he hates all of them! So have not been swaddling. I’m in Scotland so been using the baby box stretchy wrap which is like a moby and got someone from NCT to check the positioning etc M shape so happy with that. We were looking a structured carriers so good to know Baby Bjorn etc are out.

I had hip dysplasia as did my mum and grandmother. My mum's was fixed with double nappies, grandmother was in some kind of cast or harness. With me it was missed until I kept falling over and had to have a major op when I was 3 followed by a big cast (other children thought I looked like a snowman) then physio to walk again. I'm fine now apart from long distance running gives me arthritis. I expect I will need a hip replacement in my 40s or 50s.

I have 2 daughters and carried them in a sling as babies which forces baby's hips into a good position. Neither have had hip dysplasia luckily and I wonder whether sling helped, might be worth looking into to do something helpful while you wait for treatment to start?

Try not to worry as so much better to be picked up early and avoid surgery. I'm sure your little one will be fine and you can still do lots of lovely things on maternity leave - baby sensory, singing, walks in the park.

DSis had DDS that was not picked up at birth (1970). She ended up in plaster from the armpits down for 3 months and then metal splints (it was 1970!!) for 6 months. DDad made her a little trolly to push herself around on.

One leg slightly shorter than the other as a result, resulting in hip replacement at 35, which then affected her back ... resulting in spinal surgery. I have no idea how DParents coped with the nappies & plaster ...

Harness sounds much better than all this!

Our little girl was also breech and her routine scan showed an 'immature' left hip, which was still present at a repeat scan 4 weeks later. We were referred to an orthopaedic surgeon (another month later due to waiting lists) expecting a harness to be fitted and had another US and were told her left hip remained 'borderline'. She was offered either a harness 'to be safe' or to wait another month and re-scan - we went with the consultant's advice to wait and see (he was very experienced and had a good feel and thought the hips 'felt better than they had scanned'). Next visit all ok on US and no harness ever needed. Interestingly the consultant told us 'you can make a good hip look bad on an US but you can't make a bad hip look good'. He seemed to think our little one's wriggling may have given her a poorer angle on the US.
So a total of 4 ultrasounds but no harness in the end. We did a lot of 'frog-leg' sling wearing in between appointments - not sure if it helped but at least felt like we were doing something!

DD2 had this and we used double nappies for several weeks. Hers was not severe and she is absolutely fine.