Development dysplasia of the hip (DDH) - Please help!

[emmamaw]

Hi Guys,
Just found out that my 18 month-old neice has DDH, and will need a really big op followed by at least three months in plaster from her chest to her ankles. My cousin had clicky hips as a child, so I remember what she went through. As my DD is the same age as my neice, I can imagine how hard it's going to be for my sister, and i want to do anything that I can to help. So far, the hospital haven't been up to much, and from doing my own research, I can see that this is pretty common. There are very few resources available in the UK to help with advice and equipment, and all the help groups seem to be based in the USA.
So I'd like to plead to all Mumsnetters to rack their brains for any info, help, tips or support that they can offer. I know there is a huge pool of knowledge here.
Thanks in advance,
Emma

Steps are a UK-based charity who will have plenty of advice for your sister if she contacts them.

Hospital should be able to come up with practical advice and maybe loan of some equipment such as car seats- has your sister been in touch with the ward where her daughter will be treated?

My dd had this, but was dx at 6 months, so the op was'nt so major (they went in from the inner thigh rather than the outer thigh)
I assume your neice has to have the bigger op because of her age.
The hospital will explain how to cut nappies up and tuck them into the plastercast, nappies will need to be changed very regular, and also your mum will have to shift her position every 2-3 hours to avoid bed sores, including through the night.
It is very hard trying to keep the cast dry because nappies wont be very secure, but I found vests with the popers underneath helped.
They will change the cast after 6 weeks, due to growing, plus it will probably stink by then.

will post some more tips, just need a minute to think.

Thanks guys for your quick replies.
Tissy - we've been through Steps, they were really helpful, in fact they were more use that the hospital! The hospital can't loan any equipment, and couldn't even recomend where to get it, just told us to look at steps website.
Waterfalls - yes, her op is really big and involves breaking her pelvis in three places, and grafting bone from her thigh on to her hip socket!

I have had 2 daughters with ddh although it was called cdh when my 1st daughter had it but they have since changed the name.

Dd1 was found and treated at 13 months so a pretty big op for her and a lenthy time in cast and the hip spica. Steps was the best organisation we found and we were lent a special carseat, a really good high chair type thing on wheels and we used a double bebe confort pushchair that didn't have a bar in the middle so was excellent for a littlen in a cast.

The cast they used for our 2nd daughter was actually splash proof and much lighter than the one for dd1. What area of the country is she? I am in Surrey and happy to lend an ear or help in any way I can.

If I am really honest I will say it was a very traumatic time for us and hard to cope with at 1st but dd1 is now 11 and her hips are perfect. Our other daughter (1 of twins) was diagnosed at 6 months so it was easier. She is now nearly 7 and also has good hips now.

Feel free to email me or pass it on to your sister
[email protected]

here is a link to other peoples stories on how they coped with children in a hip spica.

Omg, didn't expect the pic to bring me to tears

Couldn't even look any further Its weird but we don't talk about it much and never kept any pics of dd's in cast or hip spicas.

I didn't realise how affected I actually am. Pregnancy hormones aren't helping wither lol

Oh I'm sorry magnolia1, did'nt mean to upset anyone

Oh no don't be sorry!!! I just didn't realise it would bring back memories of it. Its more pg hormones to be honest and the thought of having another baby with ddh scares me a bit.

Hi Magnolia, and hope you've cheered up again. I know how upsetting the pictures can be, but as I keep saying to my sister, most of the pics show babies smiling - it's the mums who seem most upset! We know it's for the best, that it's necessary, and that the she will be fine in years to come, but mum and dad are quite angry that the hospital/doctors/nurses etc. haven't prepared them, they've found out more from the websites and other people. They were told they can't have any help with equipment, and as they don't know exactly what shape of cast baby will get they can't start getting car seats and prams organised. It's really frustrating for them.

emmama

Can you say where your niece is having the op? My dd was referred to Birminghams Childrens Hospital, and they were all fanastic there, they fed me with so much information, showed me the x/rays etc, they were very supportive, and the surgeon and nurses etc was great with her too.

My dd1 was at Epsom Hospital and Dt2 was at Worthing Hospital. Both were fantastic

I am fine now, Your neice does sound like her op will be a lot more in depth than what I know of so maybe the cast will be slightly different?

It's Alder Hey in Liverpool. The hospital has a fantastic reputation, and I'm told that the consultants are excellent too, but it seems to be the after-care and community support that's lacking, and we live quite a distance from the hospital, so we have to rely on local GP and district nurses, who don't seem to have much experience in this field.

Yes we live 50 miles from BCH but had to travel there for every check up and consultation, including the after care.