has anyone experienced this with ddh/chd?

[hubbard86]

my dd was put in a pavlik harness from 4weeks to 17weeks for bilateral hip dysplasia. At 17 weeks we were told her hips were normal and given a follow up appt for april 2012. She is now 9 months. Not walking, crawling, rolling or weight bearing on her right side. I have taken her to a pead physio as i wondered if her lack of mobility was anything to do with being in the harness.
At the physio i was told to get an appt with consultant asap as her leg/hip isn't right. Her right leg is half inch longer than the left, with the leg creases and knee at different heights to the left (possible right hip dislocation)

Has anyone else experienced this?

In my head i'm kind of preparing myself for a closed reduction. As after 6 months the pavlik is not likely to work.

I am waiting for a phonecall from the consultant today to see if we can get a rush appt and am taking dd to drs tomorrow so they can get on to the consultant. Not sure how long we'll have to wait and it's this not knowing thats horrid

bumping

...

been there(cdh of left hip) but it was a long time ago as my dd is now 11 years old but like your dd, dd was in a pavlik harness from 3 weeks of age and came out of it at around 15-16 weeks as it was not working and she was booked in for the closed reduction op at around 4.5 months of age providing she weighed 5kg(she was 7 weeks prem) so they gave her a few weeks of 'being a baby'- I think more for my mental state than for anything medically needed at that stage.
Closed reduction successful at 4.5 months (with a slight cut in the crease of her leg for maneouvering by the surgeon) and in cast until 11.5 months and then a plastic froggy harness for about 8 weeks(not 100% sure but know it was at least a month as she celebrated her 1st birthday and had it on)
DD still has a leg length discrepancy and I have been told by her consultant that cdh, leg length discrepancy are quite occasionally to be found together. My dd also has cerebral palsy(I will be honest here and say this as if you chose to search my posts on mn you would find this out and I wouldn't want to alarm you uneccesary)BUT it is more unusual to have all three but is quite often found in first born girls?? born to 'petite ladies'
Where abouts in the UK are you as I would certainly recommend the hospital that dd attends(the consultant is a leading one in the Uk and he saw dd at 3 days old and still sees her now for check ups- that I think is showing his dedication and commitment to our children and the children of the future as he has carried out research and written about his knowledge....
Good luck and just shout if you have any questions- don't be alone I have learnt so much from mn, have you also seen the steps website?

yes i have checked out steps. I seem to turn to mn first. She was my 2nd baby. I am def not petite (5.11 and weigh more than i should) and was not breech. She only had an ultrasound as i felt something was not quite right. We're in the midlands. I'm still trying to get hold of her consultant. Keep getting told by receptionist that she'll ring me when she's spoken to him. I just don't think she can wait till april as she'll be 14 months then

My urgent advice is- ring them constantly to get your DD seen to as soon as possible. I cannot stress this enough- our DD had a closed reduction to treat CHD of left hip when we forced the hospital to let us change consultants- the op had been cancelled THREE times by her first consultant, and she was almost a year old. Because of the cancellations leaving it later and later, the closed reduction was a failure, and she has had to have an open reduction at just over a year old. Which as you probably know is something parents want to avoid, if lesser measures cold work first!! I feel very let down by the first consultant. I am not going to go into details about the shittier aspects of the operation and how she is afterwards because it is an unfortunate but necessary thing for her to go through; needless to say the entire thing has been horrible for her

If I could go back in time and harass the first consultant more to get it done quicker, or swap[ed consultants sooner, I would!

Fingers well and truly crossed your DD will not require anything further after closed reduction, as this is just an account of what we have been through- but generally the longer it is left, the more invasive the treatment.

If you want any details of our experience or to chat about it I'm more than happy to

have pm'ed you

i will be back on the phone in the morning to the consultants office aswell as taking her to the gps so they can ring too and put more pressure on them. I've read so many case histories when the longer it's left the worse it becomes and the harder it is to rectify. If you could send me your experiences to me would be great. Please don't worry it might scare/upset me as i really need to prepare for everything. Thank you

I can't offer any advice but my daughter has bilateral DDH and she's just had open reductions (late diagnosis at 2 and a half). We're in the W Midlands as well so more than happy to have a chat if you want to!

Not sure if relevant but my DD was diagnosed with CHD at 15 months and had the ops and hip spica. Wasn't diagnosed earlier as the only apparent abnormality was the extra crease. She was as mobile as any other baby her age. Hopefully your DD won't need any of these proceedures but if you have any questions, don't hesitate to ask.

My DD was the same as yours Heavensmells in terms of crawling normally, trying to cruise, now she's reduced to a kind of army shuffle across the floor using just her arms

Can I ask you if your DD had open reduction? Was she offered any physio/hydro therapy afterwards? because after my DDs open reduction, in spica for 7 weeks, they took it off...and offered nothing, she just has to 'get on with it'

She was hysterical the first week at every movement, and only now can she lay on her stomach and pull herself along with her arms, she will not move the affected leg whatsoever though. Has been a sharp realisation that the car seat, pushchair etc is more of a challenge for her than i initially thought it would be. She's been out of the spica for around a month and is improving slightly, but still has a skinny wasted leg on the affected side that she will not move, still cries daily when moved/nappy changed etc.

The hospital seems to have no worries about all this though, and I'm not sure what to expect in terms of length of recovery. So anyone elses experiences would be excellent to hear about

Hubbard86 sorry didnt see your message above, my advice is expect things to take longer than the hospital tells you they will. I didn't expect to be in longer than 2 days/nights with DD but it ended up being 4 nights; she was much more fragile than I had anticipated at first too. They had her on more drugs than I had known would be involved, an IV for fluids because she couldn't eat/drink,a continuous morphine drip (that really shocked me, didnt realise she would have that!), large doses of paracetamol and ibuprofen for few weeks.

Obviously this is just our personal experience and I'm sure others have more positive stories, but I was horribly disappointed to see her little spindly leg after the cast came off so be prepared for that too. It will gradually improve!

I got asked a fair few times if she had broken both her legs or been dropped but being as I am I just bored them to tears with her medical history until they pissed off. And became almost evangelical about others getting their babies hips thoroughly checked early on!

On the plus side, the spica itself is nothing to worry about; its a pain in the arse (literally) when they poo/wee up it, but can be dried out with a hairdryer on cool setting The trouble started for us when she came out of the cast and can't seem to orient herself with her new weaker body I am sure she will improve though. Whch hospital are you with? Hope they bloody listen to you when you call back

She did have open reduction, with metal plate in the femur. It was in 2003 so not sure if treatment has moved on since then.
She wasn't offered any physio and like your DD had a very skinny weak leg for a while. She was in the hip spica for 16 weeks though and was just 2 yrs when it was removed. It took her about 3 weeks to walk and she has been fine since. She is now a healthy 10 yr old who apart from a little scarring is no different from any of her friends.

Just wanted to add that obviously before the op she had full mobility so was not learning to walk for the first time like a younger child would. She also had longer in the spica so wounds from surgery were fully healed and recovered.

Wow your DD did very well to walk so quickly afterwards! That gives me hope that my DD will gradually pick up and improve too She was in spica for 7wks so maybe not healed totally inside perhaps. Glad to hear your DD has no ongoing problems; is she still having checks and things from hospital? They think our DD will need checks until teen-age to keep an eye on things. I dont think their methods will have changed much since 2003, the hip spica is such a clumsy and stinky thing, wish they would think of a better way to hold their hips in place in this day and age

Yes she has yearly appointments. Consultant actually wanted to sign her off this June but I just wanted her to be checked for a while especially whilst she's growing. Scarring really minimal too. The one on her hip is hardly there and the one on her leg although quite dark as she was operated on twice to put in and remove the metal plate it is really neat.

my dd has never rolled, crawled or made stepping motions. I know she's only 9months but the majority or babies do these things before now and she makes no attempt to do them. If she stands either on my lap or just held she will on take her weight on her left leg and use her right just to balance. I have kind of resigned myself to her needing to go into a harness or cast again. I really hate the thought of it. Got really upset earlier when one of my friends babies were crawling around and she wished her ds was more like my dd whereas i would give anything to have her move around. I can't really say anything yet as it's not confirmed and i don't want to alarm people. Only my dh and dm know

Hubbard your post made me feel very sad for you I have had similar feelings.
If it's any consolation, my first DD whos now 4 has absolutely no issues with her hips, and she never crawled, just bumshuffled, then walked at around 13-14 months. So the 'milestones' can be very very different, try not to focus on them too much. 9 months is still very young. If your DD requires treatment, her 'milestones' will be less relevant, and honestly you probably won't see them as being so important. My DD could crawl before the op, but seeing her dragging herself along by her arms a few weeks after the operation (not moving her legs at all lol) makes me 100x prouder than her initial crawl! (hope that makes sense)

Unfortunately it is just a case of 'resigning ' yourself to the treatment your child has to have, no alternative. I told a few close friends beforehand, and put a few photos of her on FB in her cast afterwards because the more people with babies who know about CHD, the more will hopefully avoid the ops stage. I had no idea about it till DDs probs. Maybe tell a close friend, if you feel the need to talk about it in RL? What made me feel crappy and judgy about myself was that CHD isn't strictly speaking a terrible thing, in comparison to childhood cancer or similar life threatening illnesses, but that doesn't mean it won't upset you deeply, I hope you get some support (my friends have been a bit shitty really, because of the extra effort involved in carting DD about with cast/afterwards) BUT DP has been excellent, so swings and roundabouts.

Just enjoy her for the meantime and hopefully her treatment will be quick and straightforward,(did you get any further with ringing them?) in a years time we will both be far from this crappy point and moving forward

i am enjoying her. Still waiting for consultant, but i do have an appt this afternoon with our really good baby dr. So hopefully she'll just tell me i'm being too precious (very hopeful emoticon) if not then she can get on to the consultant too and probably has more impact than just coming from me and the physio.
I know all babies are different so thats why i waited till 9 months before seeing a physio. It's just she has never made an attempt to move. Even rolling or bum shuffling that made me worry.

dr has referred as urgent. Was really hoping she would tell me there wasn't any problems. Just got to hope the scans come through as normal. I'm trying to be strong but just wan't to burst into tears

hopefully will speak to the consultant in the morning for an appt

Keep strong. It's really good that everything is being checked out asap. My niece has just started walking at 20 months old. She never crawled or really cruised. She is healthy and just a little late to develop.

Ah things are moving forward with the dr etc, that's good. Hope all goes well, keep us posted, and all the best to you and your DD

Hi just wanted to let you know that having had a child with DDH and gone through harness wearing then surgery and spica wearing, i know how frustrating it is to not be able to dress your kid properly during that long time. That prompted me to design my own range of clothes for kids being treated for DDH and start Hip-Pose Ltd to help parents in a small way cope with this trying time.

Please visit www.hip-pose.co.uk for more information and email/blog me back if you'd like more info. I'm also hoping to get NHS on board!

Many thanks!