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Need some hand holding my daughter has been diagnosed with severe DDH (both hips)

(8 Posts)
EverythibgisonmyMurtaughlist Sat 01-Feb-14 07:41:52

My world fell apart on Thursday. Maybe I'm being over dramatic considering it could have been a lot worse but I can't help feeling devastated. My dd's nursery took me aside a couple of weeks ago asking about the fact my little one had a bit of a waddle when she walked and didn't like to climb (she's 28 months).

Long story short dr referred her for emergency appointment at the local children's hospital where an X-ray showed she has severe ddh.

We've had a look at the STEPS site and a few people have done the usual oh I know someone who knows someone who had that and she's fine now which has helped. But how do I stop crying?

Her surgeries won't be till April time and the consultant has said she's not in pain and not to baby her. Just let her do what she's always done. But it breaks my heart when she starts dancing or runs about chasing me or her daddy shouting "I'm coming to get you".

How do people cope with this? I know it could've been a lot worse and she's not "sick" as such but I'm really scared about what the next few months/years will bring.

SecretRed Sat 01-Feb-14 07:47:07

Hi, I'll be back on later as getting ready for work but my dd had her ops at 23 months for this and coped really well. She's 12 now and absolutely fine. If you've any questions feel free to ask anything.thanks

bubbleandbubble Sat 01-Feb-14 07:55:19

Hi Everything, another one here to say my dd also had this. Not easy to get through at all but it can be fixed and I'm sure she will be fine. My dd is now 9 and fit and athletic. The Steps forums are fab for practical advice and help too. Do you know which consultant is doing it? And I'd go ahead and cry, it's a hard thing to deal with, but there is lots of support out there for you

EverythibgisonmyMurtaughlist Sat 01-Feb-14 08:06:30

Thanks Secret and Bubble. We met the consultant on Thursday. He's really nice and very confident which is reassuring. It's still really fresh and I know it's the best thing for her but apart from the waddle she looks fine. She has no idea what's to come and it kills me.

I'm also annoyed because when she was only a few weeks old I kept mentioning her clicky hips but was always told oh it's fine some babies are just clicky. Apparently that plus her delay in crawling/walking should have raised a red flag. When I spoke to the HV team apparently my concerns were never noted on either my records or hers.

No point in focusing on what could've been - I guess it is what it is...

SecretRed Sat 01-Feb-14 13:49:04

Will she have to have a hip spica? Or have times changed since my dd had it done?

EverythibgisonmyMurtaughlist Sat 01-Feb-14 19:33:47

Yes to the hip spica. They're a bit nerve racking.

WolfMoon Sun 02-Feb-14 23:36:59

Just to let you know that I had DDH as a baby (not that it was called that the many many many years ago!!) and went on to have a pretty long career as a professional dancer, and even now still teach a bit now and then. I was a similar age to your DD, and I really don't remember a thing about the surgery or treatment. You're right, it could have been a lot worse, but when it's happening to your baby, it feels like the end of the world and it's totally natural to want to cry and cry - I'd go right ahead and have a good old cry if you need to.

EverythibgisonmyMurtaughlist Thu 06-Feb-14 09:57:13

Thanks wolfmoon that helps to know you've been through it and it worked out well. There are a few stories/blogs online about children going through it but nothing really about people who are grown up now after having it and what their life is like.

My little girl loves to dance and I must admit it kills me at the moment watching her dance about the living room knowing that will be stopping for a little while. I am starting to get my head round it but still get a but teary when I think about the what ifs.

Hopefully it will be a case of short term pain for long term gain.

Just got to focus on the positives and will be doing all the stuff she loves that might be hard or impossible when she's in the case between now and her surgery.

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