Developmental Hip Dysplasia

[KillashandraRee]

DS 3wks has just been diagnosed with bilateral hip dysplasia. One hip was noticed at birth but ultrasound found problems in both hips and from doctors conversation they both seem quite bad. DS is second child, wasn't breech, is a boy and we have no family history so doctor said he goes against all criteria for at risk babies and she was very surprised his hips were so bad.
I've got to go for harness fitting tomorrow or Friday but she seemed to imply its likely we'll need a cast. Anyone any hints/ tips / advice or reassurance it would be greatly appreciated I'm trying to be objective and not get too upset for my darling little boy

[KristinaM]

I'm sorry to hear this, of course it's a shock for you all

I've no experience of this but lots of Mumsnetter have , I'm sure, and they will be along later

[TallGiraffe]

I had it as a baby (obviously don't remember) but I'm totally fine now.

My niece needed the harness and it sorted her out. Tbh she wasn't very keen on wearing it, but the 6weeks did the trick and her parents just kept telling themselves that it was for her good and she wouldn't remember it. She crawled and walked right on time.

Good luck.

[KillashandraRee]

Thank you. Have been to have harness fitted this afternoon and DS is currently asleep so hopefully he won't be too disturbed by it. He's just so little...

[KristinaM]

I hope it goes smoothly and you don't find it too distressing

[KillashandraRee]

Thanks Kristina, he was very unsettled last night up with lots of screaming which is very unlike him. I think he was frustrated at not being able to stretch his legs out.

[KristinaM]

Oh dear, you must be tired

how has he been today ?

[stoopstofolly]

Poor you. I remember being so upset when DD was diagnosed. She was a first born breach girl and we do have a family history, so whilst it was a shock it wasn't a complete surprise. I just felt relief that they'd caught it- they missed it in another family member (focusing on other health problems) and only realised when she was 3. She's now had 3 hip replacements until there's nothing left to build a new hip on, has very limited mobility and it has really affected her life. So- although the harness is a pain, the alternative is much worse.

I remember the harness getting very smelly- DD had reflux as well and was sick on it daily! Using plastic backed bibs at every feed helped things. There's nothing you can do about it though as you can't take it off. I bought extra big babygros that fitted over the harness and some pretty cardigans- the aim is comfort not style! They seem to tell everyone that they might need plaster (I got to know all the other families in the waiting room) and none of us did, so I think they err on the side of caution.

It seemed like the end of the world- at the time and DD did fall behind on milestones like rolling etc, BUT as soon as it came off she regained all the lost ground. She walked at 10m and is now (age. 8) a brilliant runner and tennis player.

Good luck

[Lovehorror]

My daughter had this but it was missed till she was 3.

[KillashandraRee]

Thanks Stoops that's really helpful. Sorry to hear about your family member so sad if there could have been a different outcome if they'd caught it sooner.

Lovehorror is your DD ok? Did she have to have surgery?

[Lovehorror]

She's 11 now and mostly ok,yes they had to brake her thigh bone and cut some off,fixed it with scews and a plate,then built a new hip socket.

[KillashandraRee]

Lovehorror that sounds scary, so pleased she's ok now.

[feesh]

I had this as a baby, but it wasn't picked up until I was 17 months old, and has caused me lifelong problems ever since. So it's great that they've picked it up now as there is plenty of time to fix it.

The STEPS charity is absolutely brilliant at providing support, and they have online forums which contain loads of brilliant tips for coping with casts etc. so check out their website if you haven't already.

If you can afford private treatment, John O'Hara in Birmingham is one of the best paediatric hip surgeons in the country/world (he fixed me where other doctors failed). He was on the team when I was little and he's my main surgeon now I'm an adult.

Also, please remember that whatever your son goes through, it will be way harder than you than it is on him (the only bits he will remember will probably be happy memories, honestly), so make sure you have lots of support yourself.

Also, for him and any subsequent children you have, make sure you avoid things like Jumperoos, baby walkers, Baby Bjorn carriers, trampolines and swaddling as they can all exacerbate hip weaknesses. There's more info on the Steps website and the International Hip Dysplasia Institute websites. Traditional baby wearing can be good for helping hip sockets to develop properly.

[stoopstofolly]

Just to add (for Lovehorror) my family member is now 46- treatment in the 60s/early 70s was a bit disastrous. Her current orthopaedic surgeon says that children who get missed these days have a much better outcome than she did because they know much more and have much better tools and techniques.

[Lovehorror]

Just to add,it will be a lot harder for you than your ds,my dd was 3 and doesn't remember anything,she had a cast not a sling.

[KillashandraRee]

Thanks all for positive stories. We had two week check and harness seems to be working so hopefully we won't have to progress to cast. We've another appointment in four weeks to see how the hips are then and will then hopefully know for sure.
DS is growing very quickly and seems to be happy in the harness except when he has wind and I'm used to it now. It's not that scary after a couple of days

[everythingisonmurtaghlist]

My lg has this too - both hips affected. Hers was diagnosed late - 2 years old - so we missed the harness stage and unfortunately have had to have surgery. She is now in a Spica cast and likely to be for several months, which means learning to walk again, physio etc.

Now the operations are over - her last one being nearly a week ago now - and we have various bits of equipment in place it's amazing how quickly you get used to it all.

I was worried I'd 'lose' my happy giggly girl but apart from being a wee bit more grumpy/ easily frustrated she has taken it in her stride and seeing her happy despite all this has helped me cope with it more.

We're now just waiting to see if what has been done works, and hopefully she won't need any more surgery. Her surgeon is cautiously optimistic. As a pp said things have moved on and I have heard lots of stories where late diagnosed children go on to have no problems at all or very minor ones.

we'll never know if had it been caught earlier this would have been avoided or if her DDH so severe that this would have been inevitable but I wish dd had had the option.

there are some good support groups on facebook that I have found to be a great source of support. If you need to rant or vent feel free to pm me - I know I have no experience of the harness but a Spica cast is restrictive too and I imagine the emotions/frustrations overlap.