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congenital hip dislocation....your experiences please

(36 Posts)
Tipex Sun 10-Jul-05 10:36:12

Am waiting on a hip scan for DS 20 weeks as I noticed his thigh creases were asymmetrical and there is a concern he has CDH. Obviously I am beside myself worrying about the idea of ops and spicas and limps etc etc.
Just wondered if anyone here had any experiences? also, has anyone had asymmetric creases and NOT had CDH?

lemonice Sun 10-Jul-05 11:04:48

Hi Tipex

Dd1 had CDH diagnosed at 9 weeks.

She wore a splint for 12 months (so no baths) It was like a harness over her chest which held her legs in a frog postion with little velcro feet.

She had an operation at 16 months, full plaster for 6 weeks from armpits to ankles and then the pin removed 12 months later.

She is now 21 so there may be changes in treatment but even when she had it there were different treatments around the country.

Ds also had diagnosed CDH but no treatment was necessary

HTH If I can answer any questions

Hopefully someone will have more recent experience

Tipex Sun 10-Jul-05 11:09:23

thanks lemonice. how did you cope with your daughter being in a harness? how did she cope?
and can I ask how come your ds didnt need treatment?

lemonice Sun 10-Jul-05 11:27:31

After the initial shock (I'd never heard of this before) we quite quickly got used to her being in the harness, she was the first baby I'd ever really come across so didn't know much anyway.

We followed the advice of the consultant to the letter and never took the harness off ourselves, or in fact under did one strap at a time to wash her with baby lotion and cotton wool.

We had to buy a proper pram because she didn't fit in the one we had.

She sat up fine about 6 months and didn't crawl but ran on hands and feet like a monkey and she manged to walk in the harness (no shoes obviously)

The worst part was monthly Xrays/consultant where we had to wait most of the day at the hospital clinic which was a long way from home. And each month we were told to see how she was the following month, initially we were told she would have to wear a splint for a few weeks and it was a bit like that all through.

It didn't bother her at all, but i did get fed up with people only ever saying how is her hip as though there was nothing else about her.

She did have terrible scarring from the op (keloid scarring) but that was all cut out when the pin was removed and although some of it came back she now doesn't have a very significant scar.

Ds hip was very minor hence no treatment, but he did fall over all the time.

I think dds CDH was quite serious hence the treatment and op.

I think like most medical problems there is a wide spectrum of seriousness in CDH.

In retrospect although we found all the medical visits distressing at the time, the treatments are totally successful and really not that hard to live with, certainly it didn't affect dd.

lemonice Sun 10-Jul-05 11:29:54

We changed from NHS treatment to private to cut out the long hospital waits, we still saw the same consultant but at a different hospital. She was covered under dh employment private health care policy.

Louise1970 Sun 10-Jul-05 11:53:39

One of my friends went through this with her dd. She really really kicked up a fuss as she thought the case was pretty urgent. Did a lot of stamping and shouting and finally got heard. Her dd was strapped up for about 4 months and she is fine now. She is now 6 months old.

tiffini Sun 10-Jul-05 11:58:21

Both my twins were born asymmetric creases, twin 2 was fine but twin 1 did have CDH.

She coped very well with the op (she was 6months at the time)the worst thing i found was having to reposition her every 2-3 hours, and it is very difficult tring to keep the plaster dry.

I can link a picture of her in her cast if you like.

lemonice Sun 10-Jul-05 12:00:05

DD1 in her Harness

tiffini Sun 10-Jul-05 12:07:32

dd in hip spica

Ameriscot2005 Sun 10-Jul-05 13:16:52

DS1 had suspected CDH (at his 8-week check) due to uneven creases. We saw an orthopaedic surgeon who said that his uneven creases were due to moulding - he basically grew unevenly in the womb, and also had an aysmmetrical head known plagiacephaly (moulded head). To completely rule out CDH, he had a hip x-ray which showed that all was well. He grew out of his plagiacephaly quite quickly - it was undetectable well before his 1st birthday. This is not uncommon for a first baby, apparently. The surgeon said that GPs are instructed to refer all cases of uneven creases, even if they can clearly see the plagiacephaly.

DD3 definitely was born with CDH (breech baby) - her leg was completely pulled out of the socket by the paed on her first exam. She saw the orthopaeds at around 4 weeks (the target time was within 3 weeks). The junior doctor was ready to give her a sling, but the consultant said to wait until her ultrasound (at 12 weeks). That ultrasound was inconclusive, so she had another at around 16 weeks and was given the all clear. Although she had definite CDH, it sorted itself out as she lost maternal hormones.

The ultrasound procedure is not very pleasant. It is quite painful for the baby as they have to dig in with the probe and apply a lot of pressure. It took over 30 minutes for the scans. The xray that DS1 had 10 years earlier was a lot easier, but with the risk of radiation.

Tipex Sun 10-Jul-05 16:21:05

thank you so much for the feedback, especially for taking the time to post those pictures!
I'm shocked to hear that the USS was unpleasant, the one thing I was ok about in all this was that the investigation was going to be easy so am not looking forward to it now. I guess we just have to face this as it comes.

berolina Sun 10-Jul-05 22:44:39

Tipex, I had quite serious CDH. Had a splint, a couple of ops, the last one at (I think) about 4yo. (I can actally remember having the stitches from that one out). After it was all over I had normal mobility (I've never been the sportiest, but not because of that!). I didn't and don't limp, but what you do need to do is make sure, if ds does turn out to have CDH and is left with a leg length discrepancy, that he gets orthotic additions/insoles to his shoes. I/my parents were never told about this option, despite discrepancy of a good 2cm, and it meant I developed scoliosis and walked in a slightly 'wonky' manner. (I now have insoles etc.) However, I don't have any pain, didn't even have any in pg.
I have a scar of approx 25cm on my right thigh from the op, but it's not very unsightly and has never really bothered me.
Lemonice is right about the spectrum of seriousness being very wide. A colleague's daughter had CDH and it was sorted out by a few months of splint. I think I was more at the worst end of the scale and even I have had no real permanent ill effects (apart from the lousy aftercare!).
It might interest you to know that statistically CDH affects girls far more often than boys.
Hope it all turns out OK

PrincessPeaHead Sun 10-Jul-05 22:51:57

a friend of mine's dd had this last year. was born in jan, diagnosed pretty quickly, I don't think was operated on but was in plaster keeping both her legs and hip static for about 6 months. Didn't seem to bother her in the slightest. She is not fine, very mobile 18mthold.

PrincessPeaHead Sun 10-Jul-05 22:52:27

sorry I mean she is NOW fine, a very mobile 18mth old!!!!

edam Sun 10-Jul-05 22:55:05

Tipex, I had this as a baby, luckily no action or follow-up required. Apparently is very common and, I gather, can resolve itself as baby grows. Hope that's the case for your ds.

janinlondon Mon 11-Jul-05 10:10:11

DD had asymmetrical creases and was referred by HV for investigation. The consultant took one look at her and asked what the F* the HV was on - child clearly not affected by CDH and asymmetry a very poor predictor. I do have a niece who was diagnosed very early after birth and was in a harness. She coped brilliantly with it and is now absolutely normal. HTH.

lemonice Mon 11-Jul-05 10:27:27

Berolina, that's interesting about the insoles..dd1 does moan about her shoes wearing out really badly on one foot.

I think she was at the extreme end of the spectrum too.

Once it was pointed out to us it was quite obvious as one leg hung down straight and the other naturally flopped back bent when in a relaxed position.

Prettybird Mon 11-Jul-05 11:02:50

my cousin was diagonosed at 12 months - what was embarrassing was his dad (my unlce) was a GP who specilaised in children (in South Africa).

Was in plaster for (I think) 6 months while they sorted int - but my cousin is now in his 20s, and was/is sporty his entire life - waterskis, body surfs (inernationally) - and is a stunningly good looking bloke.

If I hadn't been told about it, I owuld never have known.

Bloomsbury Mon 11-Jul-05 13:25:02

Hi - just thought I'd let you know about another possibilty. My daughter was also referred to an orthopaedic specialist, because she had a number of indicators - first born child, assymetrical folds, breech, leg length discrepancy, etc. However, following scans and x-ray, they've discounted hip dislocation or displasia, and instead say she's a 'moulded' child, with limited abduction of one of her legs (one is as bendy as it should be, the other hasn't got as much 'swing'). Fingers crossed, she'll be fine in the long term - will think about insoles though, because I'm not sure whether her leg lengths will totally level out. This is my first post on mumsnet - hope I wasn't too long-winded!

Prettybird Mon 11-Jul-05 13:42:31

Welcome Bloomsbury - and no, you weren't too long winded!

Ameriscot2005 Mon 11-Jul-05 14:39:20

Bloomsbury,
My first child was a mouldy baby (doesn't sound as severe as yours though) and he was evened out well before his first birthday, and at 13, is quite athletic.

potty1 Mon 11-Jul-05 14:54:14

Hello Bloomsbury - welcome to mumsnet.

My dd has a LLD (not hip related) - I agree it's important to look at getting insoles or a shoe raise as the development of the spine and hips can be affected if they aren't 'levelled up'. Dd wears her raises pretty much all the time but often suffers pain during the summer months when she's wearing sandals or flip-flops.

Tipex - hope your ds's scan goes Ok and he isn't too uncomfortable.

PrettyCandles Mon 11-Jul-05 15:21:20

Tipex, please don't worry too much about the scan - my experience was completely different to Ameriscot's. My dd was born with clicky hips and shoulders and was refered for a scan for CDH. The scan took about 20m, dd wasn't particularly upset and the whole business wasn't unpleasant at all. Her clicks resolved themselves (though her shoulder continued to click occasionally). She's 2.5yo now.

Oddly enough, both ds and dd had uneven faces, and ds tended to curve to one side when lying down, but no-one else could ever see what I was pointing out. Only recently, when looking at pictures of them aged 4-5m, that people have said "Oh, you're right, their faces were uneven - how could we not see it then?" And when the dentist commented that their jaws are growing crookedly I had to point out that in fact they always had been crooked and have in fact straightened out a lot since she started seeing them!

Hopefully you will also have a good easy outcome and your ds will grow out of any possible problem.

KCD Mon 11-Jul-05 17:36:16

I would also say don't worry about the scan. My DD was diagnosed at 6 weeks and has been in a harness for 9 weeks now. We have had 8+ scans and they don't bother her at all (the only bit that sometimes gives her a bit of a surprise is when they put the gel on and it's cold - like when you have an ante-natal ultra sound scan - but she has never been in any pain).

She's got another 3 weeks in her harness (nights only now) and so far the scans seem to show that it has worked (fingers crossed). It was quite difficult to cope with at first, but definately more so for us as parents than for her.

Tipex Mon 11-Jul-05 20:16:50

Oh thank you all, you're all so kind and have actually reassured me alot. I am pleased that there is a possibility that the creases do not indicate CDH, as he has no other signs, no LLD and hips fully abduct. Our local childrens hospital is excellant and I have been told the wait is no more than 2 weeks which I think is pretty good. we're off on holiday in the meantime and will try to relax and not worry unduly.
This has been my first experience of how it feels to worry about your child...its overwhelming isnt it?!

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