Hip Dysplasia

[Kekke]

My 8 week old daughter had a routine hip scan yesterday and I was told there is problem with her left hip and she would need to be 'put in a cast'. I've done a search on here and read all about the harnesses etc and tips on how to cope, which has been really helpful, but I have a couple of other questions and I wonder if someone can help pls.

How long did it take for you to see a specialist once it had been picked up? I ask because I'm currently living in Romania, but due to leave here next week. I have an appointment with our GP next Friday, but I'm worried if I then have to wait another week or two to see a specialist, time is marching on. Is it crucial that treatment is started straight away or will a few more weeks make no difference?

Can a baby sit up on your knee when in a harness or do they have to lie flat? We are due to fly to Belgian in a month for DD's Christening and then out to Oman in mid August where we are going to be living. I'm wondering if it's going to be possible to fly with her.

I am utterly devastated. I know people have worse things to contend with, but it came as such a shock and I am so sad for DD. The ultrasound took 5 mins, they handed her back to me, told me she's need a cast and showed me the door. The Dr. said she couldn't answer any of amy questions as she wasn't a specialist and that was that. All I know is that it's just her left hip and it has an angle of 58 and 68 degrees.

I think it's going to be long 8 days until we get to see my GP and get a referral

Hi Kekke, I am writing this on the run so it will be brief I'm afraid but I couldn't let your post go unanswered. Are you coming back to the UK? If so the normal way to treat this would be with a pavlik harness not a cast. The success rate of the harness is very high even if it was put on in the next couple of weeks. My DD was in one from 12 weeks old for 3 months and it sorted out her problem. Your DD doesn't have to lie flat, she would be able to sit up. It's just that her legs will be out at a bit of an angle. I don't think it would prevent air travel but you might have a problem with some car seats.

I know how you are feeling just now. It's awful isn't it? I wasn't expecting the news about DD either and the shock was horrible. But you will find lots of support on this board, there's quite a few of us who have been through this here and we will help as much as we can. And honestly once it's on, the harness really is no problem at all. Tbh at that age even a cast would be ok, they are so adaptable.

Ok got to rush, but will pop on later to see how you are.

Sorry I have realised I didn't answer your question about how long a referral takes but that's because I don't know. My DD's problem was picked up at a routine hospital scan and her harness was fitted about 2 hours later. I think there is good awareness in the UK about needing to act quite quickly so hopefully you won't have to wait too long.

Thanks so much DrCosyTiger. We are flying to the UK next Thursday and have an appointment with our GP on Friday and she'll give us a referral to the hospital. Hopefully it won't be more than a week or two before we see a specialist. In the meantime she's told me to double nappy DD in an effort to keep her hip from moving too much. I just hope they have over-reacted here and it proves to be not too bad once we have a scan again.

Good to know she will be able to sit on my knee. I've read that people say a beanbag is a good idea to prop them up when at home, so I'll look at buying one of those.

I'm feeling better today now I know a bit more about the condition and how it's treated.

Hi again Kekke, glad you're feeling a bit better. What you might want to do as well as a double nappy is keep your DD's legs apart as much as possible eg when you are carrying her have one leg either side of your body iyswim. That's the position they will be held in if a harness is fitted. And if that does happen, I promise you will get used to it really quickly. My DD felt all strange and floppy when she came out! Good luck, keep posting, let us know how you get on. And if you think of anything else you want to ask, we are here to help.

Hi Kekke. DrCosyTiger is my co-hip-dysplasia-veteran and has said all I would have said so I just wanted to say good luck.

My DD wore one from 8 weeks til she was 11 months old which is the longest I have ever heard of someone wearing a Pavliks but she is now a very bouncy 3.5yr old and you would never know she'd been in one. I am happy to answer any questions too.

Hiya my little girl was diagnosed with DDH whilst we were still on the ward, we were initially told that she would be in a pavlik harness for at least 12 weeks and then if that didn't work a cast, thankfully at her 8 week checkup we were told that her hips had corrected themselves and the harness could come off, she's now 17 weeks and her last check was all clear (we have another in 3 months) we were very lucky to see great physios (you have to go every 2 weeks for readjustment and a bath I found they were really knowledgeable and supporting.

It is completely hideous to be told their are problems but my little girl really wasn't bothered, I was more upset !

Hi Kekke. You have my sympathies. My DD was in a pavlik from 8-18 weeks old. I've posted on here before with bits of advice about dressing and transporting your little one and also our experience of hospital treatment and useful questions to ask.

In the UK they will do treatment with a Pavlik harness and only progress to a Spica cast and/or surgery if the Pavlik fails. Thankfully, the Pavlik harness has a 90-something % success rate so the chances of needing anything more serious are rare.

In terms of referral times, obviously we're talking about the usual NHS postcode lottery. BUT I will say that the thing that took the time for us was getting the ultrasound and diagnosis. As you already have this I would be hopeful that you could be slotted in for a quick consultant/physio appointment to get the harness on (as they are aware that time is of the essence for this treatment). It would be helpful for the GP and especially the specialist to have access to your scan results and diagnosis records - are you bringing them with you?

It's obviously and rightly a concern that treatment starts sooner rather than later but I can't imagine a few weeks at this stage will be too detrimental, it may mean a few extra weeks in the harness. The real issues are where dysplasia has been missed and the baby has begun to bear weight on the joint. We're talking from age 6 months plus I would think.

I shared your feelings of devastation when I found out about my DD and I dealt with it by, like you, educating myself and reading everything I could get my hands on. I also have the benefit of knowing someone who wasn't lucky enough to have early diagnosis (my MIL who was diagnosed at 4 years old) and as a result has suffered a lifetime of pain and operations. In comparison, the Pavlik is a walk in the park, DD won't even remember it and she now has completely normal healthy hips that will serve her well for life.

You can sit your LO up on your knee in a Pavlik, no problem. Her legs will go either side of your knee. It actually helps to support their backs upright. The harness is soft so she'll still be quite easy to move around, she'll just feel a bit more square/solid if that makes sense?!! I flew with my DD in a harness, really no different to her without the harness (except the naughty person in me used the "handicapped child" card to jump the ryanair queue and get decent seats )

Once you've got over the initial shock of the diagnosis you will find that it's really quite easy to deal with and now DH and I discuss her time in the harness like any of her other milestones, smiling, sleeping through, whatever.

I, like all the other posters here, would be glad to answer any more questions you have to put your mind at rest. It honestly isn't as bad as you're feeling now and you'll be able to get on as normal whilst your DD is in her harness. Good luck and keep us updated.

The STEPS charity have a lot of useful info and advice.

They were a great source of help when DD ended up in a hard brace. I paniced like mad and in the end it was no problem, she didn't have a clue. I look back now and wonder why i made such a fuss. SHe had it on for 6 months and then had yearly scans or xrays to check her progress. At 4 was discharged from the hospital.

Good luck