Hip Dysplaysia Support Group

[MistyFying]

Finding out your baby may have Hip Dysplasia can be a stressful time for parents. The thought of putting your baby in a harness can be very upsetting. Please share your experiences past or present and help support others going through this tough time.

Developmental Hip Dysplasia affects approximately 1 in 600 girls and 1 in 3000 boys in Australia. It is a condition where the hip joint is dislocated or prone to dislocation, due to either the socket being too shallow or the ligaments being too slack allowing the ball of the joint to fall out of place. The left hip is 3 times more likely to be affected than the right, and bilateral hip dysplasia is not uncommon. There are a number of known causes of hip dysplasia including family history (1/3 of cases have a family history), congenital disorders (eg spina bifida or cerebral palsy), breech delivery or a multiple birth.

Signs that a baby may have Hip Dysplasia can be reduced joint mobility, a low clunking sound when the leg is rotated or an unusually large perineum. If only one hip is affected, some other signs can be that the skin creases of the buttocks don't match or one knee may look higher than the other. Sometimes diagnosis doesn't come until later (about 2 or 3 years old), and this is indicated by an unusual waddling gait, a limp, uneven hips or walking on tiptoes.

Approximately 95% of babies born with hip dysplasia can be successfully treated. Treatment for a newborn involves a Pavlik harness which holds the joint in place while the baby's skeleton grows and matures. Subsequent x-rays will track the hip joint's progress. The Pavlik harness is effective in over 85 per cent of cases. Most babies will require the harness for between six and 12 weeks and do not appear to be distressed by its use. Babies diagnosed over 6 months old may require a general anaesthetic to manipulate the hip back into position, and an operation may be required.

Most babies with successfully treated hip dysplasia have no further hip problems later in life, although they may be susceptible to arthritis.


Sourced from The Victorian Government Better Health Channel Website

The previous thread is here.

[Haileys Mum]

Hi Guys,

Just back from Melbourne. Hailey's hips are no better after 2 weeks in the Pavlik harness and 2 weeks in the DBB so we are going back soon, 2-3 weeks, for surgery and a hip spica. I am totally devastated, numb, angry, sick, and god knows what else. I don't really know what else to say. Just thought I'd let you know.

[bridee]

Jo - so sorry things have not improved. There are people on here that know about hip spica so I'm sure they will be able to give you support.

[ZigZag]

Hey there HaileysMum - great name

Sorry to hear little Hailey's hips are no better. My DD had the hip spica too. Just wanted to let you know, our experience, though devastating to initially deal with, was a good one. Quick run-down of our story. Diagnosed at 6mths, into spica cast at 7mths, out of spica at 10mths and straight into brace until 18mths, worn all day everyday including sleep (max. 1hr free). She went in for surgery but they were able to manipulate her hip into the correct position whilst under so luckily no open surgery was required, but was still put into spica. She's about to have her final check-up in a couple of months and all is looking pretty good (she's just about to turn 3).

Hailey had the spica put on at the beginning of summer so I immediately thought we'd have a particularly tough time on our hands but she was amazing with it. Although not exactly something you want your child to have to go through, babies are amazing at what they can cope with. We did have a couple of problems with sleeping but had other factors contributing to it. Hope you have lots of people around to love and support you through this time. You will get through it and be all the more stronger for it as will your daughter.

Don't hesitate to ask any questions. I know others on here have gone through the same thing.

lots of for you and your family during this difficult stage.

[LauraK]

Jo

So sorry to hear that things havn't inproved, can't even imagine how you must be feeling. I was in a spica cast when I was 13 months old and I can't remember a thing and my family tell me that I adjusted really well - it was them who struggled to see me in the cast. I know it's no help at the minute but my hips are absolutely fine now and this keeps me going when I worry and get down about Harrisons hips.

Keep us updated on how things go and take care of yourself.

Laura x

[Haileys Mum]

It seems to get worse for us at every turn. Monday Morning the Paed Ortho's secretary rings and says Hailey needs surgery asap, as in this saturday, so of course we freak out! But we get over that and start to get prepared, then at 5 pm today the hospital ring up and say they have been onto our insurance co. who won't pay as they classify this as a preexisting illness and we have only has health insurance since june last year.... So regardless of the fact this was only diagnosed 5 weeks ago, and we have had the insurance for 8 months, they are saying it's pre exisitng and won't pay. Now we have to get all these forms filled out so they can do "Further assessments" and in the mean time pay private rates in a private hospital and also pay the surgeon and anaesthetist. Fingers crossed fo a tatts win!!!!

God i can't wait to say something positive to you!! I feel like an angry whinger.

Thanks Laura, It is nice to know that Hailey will be ok eventually, just seems so far away at the moment.

Hi Amy girl, The ortho surg is hopefull he won't have to open up Haileys right hip, but certain he will have to open the left one. I hope our Hailey copes as well as your Hailey,

Thank you all for your support.

[LauraK]

Hi Jo

We will all be thinking about you all on Saturday. Can't believe it about your insurance company, thats the last thing you need, it never rains but it pours! I know it's a cliche but you will all come out of this awful situation stronger people.

My husband is convinced that the brace Harrison is in is making no difference as we can't seem to see any changes hsi hips. I really hope he is wrong as if the brace isn't working then it's likely he will need surgery when he is a year old. Anyway, we will have to wait and see what happens in two weeks time when we are back at the hospital - we know not to expect too much.

Best of luck for Saturday Jo.

Love Laura x

[HKBess]

Hi Haileys Mum

My experiences with my DD is very similar to Amy girl. My DD was diagnosed at 6 weeks and went in for open reduction on both hips at 3mth, spica for 6 weeks (during summer) and a brace for 7 mths. She even started to crawl in the brace.

She is now 3 1/2 and you wouldn't even know there she'd had dysplasia.

While I can now laugh about trying to keep the spica clean, I still have vivid memories of the emotional time it was, and am thankfull for all the family support we got.

All the best

[nicoli]

Hi all

I've been offline for a while - I had trouble with the link to the new thread.

Jo - I am so sorry to hear about Hailey. I know how upset I was when Scarlett was put into a harness so I can't even imagine how freaked out you are right now. I hope everything went well with the surgery and that Hailey (and you) are adjusting well. The thing with your insurance company makes me so mad! How can it be pre-existing if you didn't know about it? I hope things sort themselves out.

As for Scarlett I just consider myself so lucky that her hips corrected themselves so quickly. She is put into her brace at bedtime and so far she doesn't seem too fussed. She has been waking a bit more during the night but I;m not sure if it's related. She is already sitting up by herself and she loves being on her tummy - although she gets frustrated that she can't get around yet. She doesn't weight bear on her legs at all yet. Did others find the same coming out of a harness or brace? She used to heaps before the brace.

Hope everyone else is going well

Nicole

[bridee]

Nicole - Georgie took a long time to wait bear after coming out of her harness. She was out of harness during the day from the start of December (completely out of it end December) and has only now begun to stand alot more now, so that is 2 months. Previously she would just get jelly knees.

[minimatron]

Hey Nicoli,

Just a quick one from me, Olivia was poor at weight bearing after coming out of her harness. She went into it at 5 weeks old so never had the chance to weight bear in the beginning. It took her a good month or so to get stronger. Shes been out of the harness for 3 months now and is cruising the furniture and can walk along with the aid of a walker with no probs.

Hope you are all well

Love Melissa

[LauraK]

Hello all,

Just a quick message to say we are taking Harrison to see the orthapedic surgeon tomorrow evening. We hadnt given it much thought until now, but are starting to get really nervous, hoping for good news but not going to walk in too optimistic. We'll let you know how we get on.

Hope everyone is well.

Love Laura x

[nicoli]

Good luck Laura - we'll be thinking of you and keeping our fingers crossed.

[LauraK]

Hi all

We've just come home from the hospital - really good news. We actually managed to see the consultant and he is very happy with Harrys hips and said that Harry only needs to wear his brace at night. We need to go back to the hospital in 4 weeks time for an x ray and hopefully Harry may be able to be brace free once we have the results of the x ray! Again, we are not building our hopes up for the next appointment but are really happy with the outcome of todays appointment.

Hope everyone is doing ok xxx

[minimatron]

Congrats Laura, hope you have a fun time exploring with Harry being harness free.

Good luck with your next appointment

[Haileys Mum]

Hi all,

Sorry it's taken me so long to write on here but it's been a long two weeks. Hailey had her surgery two weeks ago now, she's in a hip spica now and coping pretty well. The heat is knocking her about a bit, she hasn't worn clothes for several days! We spend alot of time walking in the pram and alternating positions for her, I think we are coping pretty well considering!

I hope you are all well.

[Rachelle]

Hi Everyone,

It's been quite some time since I've posted and I wanted to check in to see how everyone is doing.

Taylor is doing great. She will actually be two years old tomorrow. She came out of her spica cast (after 3 months time) on Jan. 2nd and straight into a hip abduction brace. After four days in her brace she started crawling and rolling over. After day 6 she started sitting up unassisted and about one month out of her cast (the beginning of February) she started walking again. I suppose it helped that she had done all of this prior to her surgery and casting but I thought that it would take her more time than it did to re-gain the strength. She proved me wrong! She can be out of her brace for only 1 hour max. per day but I love being able to take it off for baths and diaper changes and I have been taking her swimming every week which she loves! I thought it would be good exercise for her left hip which is still pretty stiff and won't abduct out completely. She walks with a limp and drags her leg which makes her lose her balance but hopefully that will improve over time.

On March 31st, we go back to see the orthopedic surgeon and I can say with some confidence, that she will get to come out of her brace completely during the day and only have to wear it during the night when she is sleeping. I am so excited and can hardly wait. I am going back to nursing school (which I was doing pre-diagnosis) on April 9th and it will be great that she can go to daycare and play in the sandbox and with the other kids without her brace on. We will go to see the surgeon every few months for x-rays and check ups and should know by the time she is 3 years old (1 year from now) if she'll need another surgery. I am hoping and praying for the best though!

Anyway, that's it for us. I can't believe she will be two tomorrow. I hope everyone is well and would love to hear from you!

Rachelle

[LauraK]

Hi everyone.

Just a quick update on Harrison now that he is brace free during the day. Within a few days of having the brace off he managed to roll onto his front and although he hasn't done it again at least we know he can actually do it! Things are so much easier without the brace and it doesn't seem to bother him too much having the brace on at bed time. He has never slepped through the night so I really hope that if he does get the brace off at night then we can aim towards him sleeping all the way through! At the minute he sometimes wakes when he is trying to move his legs and he gets quite upset so we end up feeding him to try and settle him and get him back off to sleep. We are back to the hospital in 2 weeks to have an x ray and hopefully we should have some good news - we'll just have to wait and see. I'll let you all know how we get on. Hope everyone else is all ok.

Love Laura.