Congenital or Developmental Dislocation of the Hip (DDH) DX at 16 months.

[lenaschildminding]

DD has just been diagnosed with Congenital Dislocation of the Hips or it's newer name - Developmental Dislocation of the Hip (DDH) at 16 months.

DD had a normal birth, not Breech, no-one else in our families has had this, she wasn't even my biggest baby, DS2 was heavier, so being cramped in my womb isn't likely.

It's a mystery really, both her hips are dislocated, she also has Ligamentous Laxity, Calconevalgus foot and is flat footed.

No one else in the family has any of these problems, except DH has colapsed arches in his feet.

Is any one else going through this with their LO's?

I don't know the severity of the damage to her hips yet, still waiting for the appointment.

Most likely looking at surgery due to her age, then 3 months in a spica cast.

Can anyone advise me on carseats, I have seen them to buy, but they are £196! If anyone is selling one, please let me know!

HI Lena, sorry to hear about your dd, I don't know anything about the condition but can you ask for a referal to an OT they may be able to help with some of the more practical things.

You need the STEPS charity and Forum - there will be many parents there with experience of children in a spica and DDH - and also I think they lend or hire car seats etc.

STEPS

Thanks for the link.

I have used STEPS as my DS has a different lower-limb condition - good luck - keep posting here about how it all goes.

I've tried to register on the STEPS forum, waiting for it to be activated.

I am fuming at the moment, I just want to know if it's normal to have to wait nearly 2 months for a clinic appointment after being told your 16 month old has two completely dislocated hips and after 18 months of age it may mean major surgery???

Thats what I've been told today, She will be 18 months by the time she's seen.

Blimey - that doesn't sound good.

What area of the country are you in, Lena? I wonder if you could ask your GP to refer you to GOSH? I would get back to your GP, anyway - who referred you for the clinic appointment?

After screaming and shouting, crying and really spitting my dummy out, I finally got somewhere today!

Went back to the lovely secretary I spoke to last week and she has worked wonders for us.

After being told that DD couldn't be seen until March, she went balisitic! She was as angry as we were! She said there was no way it could wait that long and to leave it with her.

She phoned me back this afternoon and said another consultant at Coventry University Hospital could see her sooner!

TODAY! at 4.30pm!

I couldn't believe it, DH came home from work early, my friend had DS for us and we called into our local hospital on the way to collect a copy of the xrays, as the referal sent last week had been lost!

The lady we saw was lovely, she showed us the xrays - not good.

DD has no sockets. There is great concern that the hips will move after traction because of her joint laxity. She fears several surgeries and a very long time in plaster. She also said it's very unusual to have both hips in this condition.

She is going in on 28th January for 3 weeks of traction, followed by surgery to cut the tendons in her groin, then plaster for 6 weeks.

After 6 weeks, they will put dye into the hip joints to see whether the traction has worked.

If it has - 6 more weeks in plaster.

If it hasn't - surgery.

So that's it. We go into hospital for a 4 week stay on the 28th.

At least the process has been started now.

It pays to scream and shout!

Oh goodness, Lena!

Very pleased you got seem sooner, but it does sound like a daunting process.

You will have to hold tight to the things that I say to myself about the lengthy surgery and procedure that DS will have this year. (he has already had surgery and 10 weeks in plaster, when he was about 12-14 months):

"It is not as bad as you think it will be
Children seem to tolerate it all much better than you think they will
The pain is all yours (i.e the parents)!"

I hope your STEPS registration works out - there will be lots of people who have been through similiar stuff.

Thanks Blu, Steps all sorted, found someone selling a car seat, so thats I weight off my mind and she also sent me a copy of her DLA forms - thats saved so much stress and hassle trying to work out the times for everything!

Many thanks for pointing me in the right direction and all the best with your DS.

Hi Len, my daughter was born with bilateral congenital hip dislocation too, but was diagnosed at birth, so made the correction with no pain until 6 months old. She now has 17 and is a beutifful young woman, plays soccer and walks or dances as much as she wants to!!

You DD has a more troubled way to go since the diagnosis has been made later, but you must go on and do your best to her. Good luck and best wishes!!!

It's always nice to hear success stories, thanks for sharing your daughters story.

I hope she continues to be fit and healthy.

lena, it does sound daunting and you sound (for want of a better word) very composed about it.

My right hip was dislocated. I believe I was diagosed soon after birth, but still had a complicated case involving various surgeries, insertion and removal of metal plates, a splint cast and so on. My last hospital stay was at 3 or 4 years of age and I have a scar down my thigh from that.

I emerged from it all mobile and to this day pain-free - the whole thing left my legs different lengths and nobody bothered with orthotic correction, so I am rather scoliotic, but am fit, healthy and came through two pregnancies with not so much as a twinge of back or hip pain.

Excuse my dumbness (for want of a better word!) what does scoliotic mean?

It's very enouraging to hear success stories, thank you for sharing yours.

bero, as for sounding 'composed', that's as far as it goes! I 'sound' it....

But inside, I'm not so sure!

I think my past experiances have given me a whole different perspective on this that many parents wouldn't have.

Loosing DS1 has made me realise that nothing compares to loosing a child, especially to cancer and however horrific all this sounds, it is not lifethreatening and I thank my lucky stars for that.

Life can throw a world of shite my way now and I'll just wade through it with a smile, knowing my angel will be by my side and wrapping his wings around DS2 and DD.

I've got a splendid scoliosis - an S curve in my spine - not a good thing to have, but not causing me any trouble - but do make sure dd gets seen by orthotics when this is all over. I just formed 'scoliotic' ad the adjective - possibly it doesn't exist

I'm very sorry for the loss of your ds1.

Our very good friend is a private podiatrist and he's already said once her hips are sorted he'll be sorting orthotics! (that's how I knew what they were!!!).

We have our very own special guardian angel wrapping his wings around us, walking beside us every day, keeping us strong.

You are coping wonderfully well..I think being through so much has made you very strong!

Still no standing here, but seems to be no desire to stand or pull up at all so I suppose we just have to be patient for a bit longer!

Lena, I haven't read all of the thread yet but just wanted to say email me [email protected] I have been childminding a baby for the last nine months who has been in a hip spica cast and then a brace for most of that time - I alerted the parents three weeks after starting to look after her as I had a concern, two days after seeing the consultant she had an open reduction. - So I have first hand experience, and the baby has been with me longer than the parents because of childcare hours, so I deal with most of the problems, apart from the real emotional side of it as a parent, although I am very very fond of her.

They had to cut a tendon to align one of the hips, one was partially dislocated and the other completely.

I got in touch with steps as Blu reccommends, there is lots of very useful information on there. The little girl I look after and I are featured this month for 'child hip' week and there is a photo of us.

I have the car seat from the In car safety centre in Milton Keynes and would be happy to sell it very cheaply as I do not need it anymore. E came out of her brace last week and fits a normal seat now.

The best pushchair is the M&P/ Pliko Pramette as you can take the bumper bar off and used with support behind her back is comfy.

If you email me I will give you my phone number.

Allie, are your pics on the website or only in the newsletter? I can't find them!

In the First steps magazine, the mum had a copy today, but I haven't got mine yet.

How do you get the magazine? Do you get it, just by registering on the forum or do you have to do something else? I didn't know they had a magazine!

Herecomethegirls, I'm putting a on my face and trying to be strong, but inside, I'm slowly going mad!

DH isn't coping at all, I think her age has a lot to do with that, his DS was 16 months when he lost him to leukaemia, so seeing DD in a hospital cot at the same age is going to be really hard for him.

DS2 if struggling with it too, DS1 went to hospital with poorly legs and then he died, it's taken a lot of reassurance for him to understand whats happening.

I have to be strong, I guess....

Who else will hold it together for DH, DS2 and most of all DD, bless her little heart.

I had Congenital Dislocation of both Hips. No family history - not a big baby, I have 2 boys and have no problems or concerns and none that I can remember. I had palster cast on each leg and could not be bathed for the first 12 mths of life so I am told.

So it can work out alright in the end. Fingers crossed for you. x

Thanks.