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

33 replies

lenaschildminding · 14/01/2008 16:33

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!

OP posts:
alibubbles · 24/01/2008 12:58

I think you have to make a donation or a monthly subscription of however much or little you want to pay.

I had a glance at it and it is very good. My family went to the Christmas party and made lots of new friends, and it gives hope and encouragement from those further down the line in treatment.

I think a small donation is worth the information that you can download - all the different handbooks etc.

LoopyLena · 24/01/2008 13:59

Ok, I'll look into it further when we get home.

tabby76 · 06/02/2008 17:19

Hi, I haven't read the whole thread yet..My daughter was diagnosed by cdh at birth...she is now 6 months old and had her hip spica put on yesterday after an operation.consequently she doesn't fit into her car seat anymore..anyone any tips on which one may be suitable and where i can get one from..i don't know anyone else in a similar situation so tips would be welcome..am feeling quite lost at the moment

Saggarmakersbottomknocker · 06/02/2008 22:00

Tabby - have a look at the Steps Charity website. The discussion board sometimes has items for sale that people don't need any longer. The site has loads of info about treatments for hip and leg problems.

LoopyLena · 24/02/2008 22:19

Update...

Went into hospital on 28th January and DD started her 3 weeks in traction at 3pm.

She soon adapted to having her legs strung up and learnt to flip over, swing around and do headstands!!!

The consultant came with the consent forms, which was very scary, I had to sign for her to have Bi- Lateral or uni-lateral femoral osteotomy, (basically either
one or both thigh bones cut and repositioned) as well as the cutting of the tendons and application of a hip spica cast.

DD went to theatre for 3 hours on Wednesday 20th feb, she had the tendons in her groin cut and her femors positioned correctly for the sockets to form around them. As she has never been able to walk, the heads of her femors were in perfect condition, which meant they got a good position without the need for cutting the femors and re-shaping them...big relief!

She has adapted very well to her new trousers!

Despite catching a tummy bug and being sick, she recovered from surgery very quickly and we were allowed home Thursday evening.

The consultant has told us that she does not think it is the dislocated hips that have prevented her from standing and walking, but the ligament laxity and this will need to be addressed after her hips are sorted. It is uncertain at this stage if/when DD will walk and further intervention will be needed.

As far as her hips are concerned, only time will tell if this will work or if further surgery will be required. She has an xray on 4th March, just to check the hips haven't moved at all. She will then have a scan in 7 weeks time to see if the sockets are growing properly. She will also have a cast change at this point. She will be in cast for a minimum of 3 months, possibly longer. Depending on the results of scans and xrays, she may need further surgery, whatever happens, she will need further surgery when she is around 4 years of age.

I am so relieved to be home, even though I came down with DD's tummy bug yesterday and felt really ill!

I am coping ok with the nappy changes, the first one took me 20 minutes, now down to 5! The hardest thing is dealing with her awkward shape and the extra weight, I suffer with my back already!!! She has a bar between her legs which makes her hard to hold.

Tabby - do look at the Steps website, it really helped me, I got a car seat from there and DD fits in it really well. You can buy the one I got from In Car Safety or they hire them out too. It's a Britax adapted seat for a hip spica cast.

LoopyLena · 03/03/2008 22:45

Xrays tomorrow, fingers crossed her hips are still in place.

LoopyLena · 05/03/2008 13:52

Whey hey!!!

Olivia has learnt to 'crawl' in her cast!

She has just made the journey from the lounge, down the hall, through the kitchen into the conservatory!

She kind of shuffles her bottom half from side to side and pulls along with her arms, she looked so cute and soooo proud of herself!

Xrays were fine yesterday, all still in place.

LoopyLena · 05/03/2008 13:53

Tabby, hows it going? Did you get a car seat sorted?

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