Hip Dysplaysia Support Group #3

[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.

[milly5]

Hi ladies,

I'm new to this thread, a brand new mum infact. Our baby was born on 16/9, and was diagnosed yesterday with hip displasia. They found it as they were doing her discharge assessment, and of course the day I was most hormonal with my milk coming in.

She has been fitted already with her harness, which she is expected to wear for at least 12 weeks at this stage, and tomorrow we are off for a scan.

I know that I should not be too concerned, as there are a million more terrible things that could have happened too her, it just came as a bit of a surprise.
Especially as I had been having some trouble with:
- just handling a newborn, not ever having done it before
- breast feeding (due to previous breast surgery/lumpectomies that I had), and had only just got the hang of it.
- just being a mum (not ahving done that before either!)
Now I feel like I have to learn how to handle her all over again.

I'm finding the nappy changing most difficult, because it seems to take SO LONG...... and she is screaming by the end of it.
I am also PARANOID about soiling it, as we have to drive 2 hours to get the harness fitted each week, so there can be no soiling in between!
And the not bathing etc. I am strugling there too. She was 6 days overdue, so has very dry skin anyway, and was already peeling quite a bit.
And clothes - she is small, 0000 were big on her, but now we have had to put 000 on her to accomodate the harness, and then she is swimming in them!

Anyway, I just wanted to have a small vent.

I hope all your babies are doing well with their treatments.

[karma1410]

Welcome and big hugs to you milly5. :-)

Being a new Mum is hard enough (and emotional enough!) without having to deal with the extra complications of hip dysplasia and a harness. I think everyone here can relate to something that you have written, even if like me, their bubs were not diagnosed until a later stage. My little girl was 11 months old when diagnosed, but just like you described, it feels like I have to learn how to handle her all over again now that she is in the cast. Not to mention more nappy changes and night nappy changes than I ever had to do when she was a newborn....lol...

I think that all any of us can do is be strong for our bubs and do the very best we can. You sound like you have a great positive attitude and you will find so many great hints and tips on this forum from some really amazing mummies. I haven't had any experience with the harness so I'm not much help in that area, but I'm more than happy to be an ear if you need to come here to vent or let off steam. :-)

Tomorrow will be two weeks in the spica cast for us. That leaves 10 more weeks to go...aarrgghh!! I have found a soft spot in the plaster that is quite flexible right near the nappy area on the leg that had the surgery, so I am just waiting to hear back as to the course of action to rectify that problem.

I'm pleased to say that I have finally found a bit of a workaround for the nappy problems I was having due to the small nappy opening. The key is...wait for it...cotton wool! And lots of it. For any other mummies that find they have a similar problem, the solution I have found is to use Aldi newborn nappies when she is awake and Aldi crawler nappies for sleeping. The reason I specify the brand is that they are a little larger and therefore more absorbent than the Huggies newborn so minimise the chance for leaks. They are very hard to get into the cast due to the size through, so it requires careful folding at each end and then a fold and tuck in the middle once in the cast. The advantage of the extra folding though is that it presses the nappy closer to her skin, which again decreases the chances of leaks. I then use cotton wool ripple to stuff all around the edges and voila!! No leaks! I have found a lady on ebay that cut and sewed some microfibre boosters to my requested size for extra absorbency at night, so we are giving those a try at the moment. We are now getting away with a nappy change at 7.30pm, then 12.30pm and then not again until she wakes at about 7am. Thank goodness because I was going crazy having to get up so often during the night.

I hope that everyone is travelling well and our bubs are continuing to smile their way through their hip journeys.

[karma1410]

I forgot to mention that our "Cast Cooler" arrived from the US today. We tried it out just before bed time and I am happy to report that even though my beautiful baby still smells a little, she doesn't smell anywhere near as much as she did before!

I was a bit worried that we would have tears and that she would be too scared once we hooked her up to the vacuum cleaner, but she thought it was an absolute blast and waved her arms around and chattered away. We only had a small session as we wanted her to get used to the whole experience, but I could definitely feel the air being sucked through the cast in certain places. Tomorrow I am going to work on a damp patch on the inside front just above the front of the nappy area where I think she must sweat quite a bit, so hopefully I will now be able to get it nice and dry. Hey, even a slight reduction in smell alone made it a worthwhile investment for me...lol...

[bridee]

Milly5- It is ok to vent. My DD1 was in the Pavlik harness (which I assume is what your daughter is in) and I was also very worried about soiling, by the end of the 12wks it was very dirty but is really hard to keep clean - just do the best you can. Clothing I was in the same situation as you - small bub but clothes were massive. I found Short legged rompers the best - while they are designed to be short they came to DD ankles in the harness, then just had socks to keep feet warm.

[furgurnie]

Hi ladies,

Milly5- sorry to hear your DD has been diagnosed with hip dysplaysia, it's heart breaking to know there is something wrong. I hope her hips develop normally whilst in her brace and she requires no further treatment. What did the scan show? How are you coping with the brace?

Bridee- did your DD need any further treatment after the Pavlik harness or just regular follow up appts?

Karma1410- Glad to hear the leakage problem is in the past, what a relief!

Emma is doing really well since being out of her cast, the brace is so much easier to manage. We have booked her in for her first swimming lesson next sunday, so this should help regain her leg strength whilst having a lot of fun! Her x-ray is booked for 16th Dec so fingers crossed her hip will look "normal" and that will be the end of our hip journey!

Hope all is well with everyone

[kungfubecca]

kick question.

dd after 15 weeks in brace is out woo hoo, but one hip is still isnt 'perfect' and we are now on 6 month reviews and i am very worried about regression.
she is starting to become very active. she will be 11 months old when we go back. i asked if there was anything i could do to reduce the chance and they said no.

any thoughts?? even about clothing, doubling nsppies etc??

[kungfubecca]

lol my previous post should have said Quick, not kick

Milly5, big hugs for you, it is really hard.

I struggled especially with the having to wear bigger clothes. To me it felt like my little newborn bubba was being stolen from me and I wouldn't get the same experiences I had with my son.
I'm pleased to say I was wrong, we survived.

not sure if this will help you or not, but from big w I got a bonds nighty, and knee high socks that fit 000 babies,for my little girl, they might help you.
My little girl was diagnosed at about 8 weeks so we went into a db brace, so i'm not sure how to work nappies around the harness. For the brace, I would flip her over onto her tumy and post it, and lifting legs to clean underneath I would, and still do use my whole fore arm. In retrospect I wish I had have tried some elimination training then I might not have got soo much poo on my hands!

Karma, well done on adapting the nappies, we do get clever when faced with a challenge

[milly5]

HI ladies, thanks for the warm welcome!

I'm not sure what happened, but I didn't get notification of any replies, not that it would have mattered, as I haven't had a chance to get to the computer before now.

to fill in some of the gaps from my first post -
- her initial scan showed "category D" (I can't remember the number, I think 2? but I understand it is classified as "severe"
- it is a pavlick harness that she has
- we have another scan and a review with specialist week after next, and we will know then if pavlick harness is working or not
- if it is working, then it is anticipated that she will be in it for somewhere between 12 and 16 weeks

mum is coping a bit better than she was the other day - just now devestated that our little girl now has "nappy rash" in the skin folds of her thighs, after only a week and a half in the harness too it doesn't seem to be getting any better, despite being drowned with curash nappy rash cream, any other suggestions?

karma - it sounds like you have been very clever and inventive with your nappy solution! So the Aldi nappies are more absorbant than the Huggies? that is good to know, because we did have one "poo explosion" but fortunaely it was on the morning of our physio appointment anyway (in the car on the way down of course), so we turned up with not only soiled harness but dirty clothes too!
do you put the boosters inside the disposable nappies, or on the outside to catch the leaks?

bridee - thanks for the tip about the short leg rompers.

furgurnie - yay for being able to book a swimming lesson! how did it go?

kungfubecca - LOL at kick question! I have no idea, but good luck! thanks too for the tip about the knee high socks.

thanks again ladies,

[karma1410]

milly5 - I may have just what you are looking for with the nappy rash problem. While I was still breastfeeding and just before her surgery was due, my DD broke out in the most horrific nappy rash as a result of some antibiotics I was given for a serious ear infection. It made it look as if her skin was burning and peeling off, and it was everywhere, including in the skin fold where they needed to make the incision. It sprang up literally out of nowhere and all my usual nappy rash lotions and potions didn't make any difference. It is likely that there was a bit of a yeast infection mixed in with the nappy rash due to the antibiotics, which may be what your daughter has due to the constant dampness in the skin folds. I noticed my DD had the same problem a few days ago in the skin fold of the leg that wasn't operated on, as it isn't getting any air to it under the cast. All I can say is DAKTOZIN!! It cleared up the terrible nappy rash / yeast infection from the antibiotics, and it has made an instant difference to the skin fold problem too. I am now keeping a light coating on the skin fold and refreshing it once or twice a day, and it is starting to clear up already. Daktozin is my miracle cream. :-)

I think the Aldi nappies are more absorbent simply because they are a little bit bigger without going up a full size. I'm not sure if that will be a good thing for your little one, but it has made a world of difference with the cast. I was out today and only had the Huggies with me, and it was so loose in the cast that I was glad we were only driving home from being out. I had Aldi nappies recommended to me before this whole hip dysplasia thing and have used them fairly constantly since DD was about 3 months old.

With the boosters, they go inside the nappy to absorb extra fluid. They are exactly the same as boosters used in the "modern cloth nappies" but the lady kindly cut them to the size I needed and lined them with a soft fleece to wick the moisture away from her skin as much as possible. They have been quite good but if your nappies are working fairly well, I wouldn't bother with the boosters, especially with a little bub. They need to be washed and reused and I still remember those newborn poos...I don't think washing boosters on top of everything else would have been a great deal of fun!

We have our first X-ray tomorrow and I am so nervous. When she gets excited, DD jumps up and down in her cast like a little jumping bean, and I can't help but worry that she has overdone it, or that the hip had dislocated again just because it wasn't stable enough. I will let you all know how we go.

I was so upset last night to get an email from one of the Mum's in my Mother's group telling me that her 12 month old has just had X-rays and now needs to see a specialist. She doesn't know the extent of the problem yet, but the only reason she asked her health nurse about her daughter's hips was because I had mentioned to our Mother's Group that uneven skin folds can be an indicator, and that I was frustrated because I had known all along that DD had uneven folds but I had no idea that it was a sign of a problem. She checked her daughter and noticed the same and so asked the health nurse who suggested that she see a doctor immediately. The X-rays aren't great so now she needs to wait and see the extent of the problem. Having just gone through all the emotion of the diagnosis myself, it hit me really hard to hear that another one of the little girls in our group (out of a group of 12 bubs) and her family were now going through the same thing. I spent quite a bit of time on the phone to her last night, but I haven't been able to stop thinking about it. It just seems wrong that late diagnosis really isn't as uncommon as it is made out to be.

Wow, that was a novel! Must run but will update once I know more from our X-ray and surgeon's appointment tomorrow.

[kungfubecca]

HI,

Milly5 try some cornflour, or you can get j&j baby poweder made from cornflour now too,will help in creases once the rash has cleared. still have to be carefull about them inhaling, but it's better than talc
Aldi nappies are good, but I find them too big for newborns. Had difficulties with poo in the db brace too, but it was more t do with the fact the nappies arn't made to fit with legs in that position and the chubby little thighs arn't there to hold it in

karma, i don't think we hear enough about hip displaysia, yet everyone know someone who has been effected. I am counting my lucky stars I have a great health nurse and gp because my dd is second born, and we have no family history, so if they hadn't had their suspicions it could have easily been overlooked.

[Miss.September]

I agree too Karma. It seems that once your own baby is diagnosed then everyone knows someone who has experienced it. Fingers crossed for your friend - but I can imagine it will be a comfort to her that you'll be able to help with advice if she needs it.

DH and I had an enormous fight about it all the other night, still months on it's affecting me and I wish it wouldn't. DD was walking around on her toes, only on one leg and I just freaked. He went off at me for panicking but all the feelings just came flooding back, the fear, the anxiety. The next day, DD was walking normally again and hasn't done it since. I hated the way I reacted, but I hated more that he went nuts. I wonder if the worry will ever leave me. I hope so.

[dusty]

Hi there
Unfortunately I'm subscribing here as DD was today diagnosed by US with an underdeveloped left joint which means she is going to be fitted with a brace . I've booked into see the GP again tomorrow to work out what we do from here to get her fitted with one. TBH I know very little about it although I have a friend whose DS has just had his removed after 10 weeks.

I'm shocked as I thought it was fairly rare and didn't think DD would have it even though both the MACH nurse at 4 week visit picked up uneven creases, and the GP at the 6 week visit thought it was worth a scan. DH seems quite pragmatic about it as he wants her to be a sporting star in the future (we are both sporty), but all I can think is my poor poppet isn't going to have baths, which she loves, and how unattractive the braces are and that she may fidget or be distressed by it as she is such an active bub.

Milly5 I also have similar questions concerns you raised above, I look forward to being able to share and learn with you all here.

[Miss.September]

Hi Dusty,

Your DD is the same age as my DD was when she was diagnosed. Each case is different though - some bubs can still have their baths, it all depends on how long the specialists want the baby in the brace. Mine was 24/7 for the first four weeks. They do get used to it very quickly, far more than us mums do. My DD's story is a long one - the short of it is both of her hips were really really bad, she needed surgery and then another brace to follow it. It started at 7 weeks, finished at 11 months. But even after all of that, she can walk and is borderline running at 18 months old. So your DD will be a sports star one day, no worries about that! I had great faith in my specialist, even though I wanted to hit him on occassions, and I think that made a massive difference for me.

[dusty]

Thanks for your reply PacRakMG. What a tough experience you went through and I'm glad to here your DD is now doing brilliantly.

I didn't realise that bubs may be able to have a bath. I guess I'll find out more including how bad the problem is tomorrow. So far I've just been through my GP, I'm not sure whether they will send me to a Paed or through the Public Hospital where I had DD.

So I guess DD will be going into a larger size clothes sooner than we expected, and looking on the bright side she has some cute 00's to try out quicker. Also an excuse to go shopping for her as I think she (or her mum!) will deserve that treat.

Its great to have your experience and advice on here

[appletree]

Yep, I heard torticollis is common with hip babies, usually where the ddh is to positioning in the uterus, not so much from family history cases.

[Madcat]

Hi all,

Must have been MIA, i havent had chance to catch up on chats for ages!!
Milli5 and Appletree - i had no idea of torticollis relationship with ddh, Miss K had this prob for first couple of months too, and had really short umbilical cord, and no family history of ddh, my reconing must have been position probs in uterus! OMG there were sooo many missed little hints, in hindsight!

Karma - may the days disappear quicky until next week ... and then for the next 6.

Miss K had xrays couple of weeks ago, bone has formed well and is now ready to to have all metal bits removed, just waiting for an appointment.

Waiting waiting waiting, if its one thing we are ALL getting good at, its waiting! HeHeHe

[dusty]

Milli5 and Appletree - i had no idea of torticollis relationship with ddh, Miss K had this prob for first couple of months too, and had really short umbilical cord, and no family history of ddh, my reconing must have been position probs in uterus! OMG there were sooo many missed little hints, in hindsight!

Madcat what were your missed hints? I too have no family history but am interested in how it may have happened.

Physio also said that torticollis (?sp) are also quite common with HD babies (neck turned more to one side) which DD also has, but she can turn her head both ways, just seems to prefer one way. Anyone else heard this too?

Milly my DD has this. Her head is a bit of a parallelogram on the right hand side, looks like she has a flat bit at the back. The osteo is trying to loosen her ligaments in the base of her skull to allow it to fill out. I think it is mild torticollis and like your DD can turn her head both ways but favours the right.

Karma hows it going with the cast?

DD has had her pavlik on for a week now and today had her first bath at the hospital. She kicked and kicked . But her groin area was just gross! I hadn't been getting in and cleaning it and the physio said to just put currash powder in there and not to wash it as its hard to dry it out.

We are getting used to it all. I'm finding BFing in public more difficult as I need to get her in the right position with legs in the air.

Also can I ask you all what you did for a car seat? She is now bursting out of the capsule so need to move her into a seat. Did you find any particular make/model the best for them to have their legs splayed?