Hip Dysplasia just been diagnosed :-(

[Butterflymm]

Hi my DD has just been diagnosed as having hip dysplasia. She was breech and born by c-section, apparently all contributing factors.

We had a rocky start with BF which is now established (still presents the odd challenge) and last week she suffered a major choking incident, she vomited and couldn't catch her breath. She stopped breathing and I screamed for an ambulance as we were outside our house. I started resuscitation which was taken over by the ambulance. Needless to say it was traumatic.

Now we have the news that my DD has hip displaysia and has to wear a Pavlik Harness. I was so upset for her and the thought of the treatment but I know it's for the best. I feel lost though, like I am unsure of handling her as I don't want to hurt her. I'm unsure about what position to BF in and I am upset that I don't get to bath her for another 6 weeks at least.

Please, if there are other mothers out there who have been through or are going through the same, can you please advise. I know there are so many worse things but I love my LO so much and don't want her to go through so much xx

Hi my ds got diagnosed at birth with hip dysplasia. He had to wear a splint for 6 months it was like a big square of plastic that went on like a nappy and secured with velcro.

It was a nightmare when he had it on as he was only allowed it off for a 5 min bath and nappy changing. We found the biggest problem for him was sleeping he coulodnt lay flat so ended up sleeping in his vibrating bouncy chair for the 6 months.

He had physio for a couple of weeks when it came off had an x-ray and was discharged.

He is now 4.10 and you wouldnt think he had such a problem as a baby he even does taekwondo now which involves loads of kicks and stretching.

Hope this helps you

hi butterflymm, no experience to offer, just a big old hug. ((((((squeeze!)))))) What a time of it you've been having! I know it may not help how you are feeling right now much, but you should know your DD is super lucky to have a mummy like you, who loves her so much x

Hi Butterflymm, oh goodness I know exactly how you are feeling at the moment - well maybe not the breathing incident, that sounds seriously scary, but the pavlik harness feelings, oh yes. My DD wore a pavlik from the age of 3-6 months. When it first went on it was such a shock. You can read my slightly hysterical post here: www.mumsnet.com/Talk/childrens_health/778393-Pavlik-harness-for-hip-displacia-need-advice-and-support?msgid=15902750

Anyway, the first thing is that even though it doesn't feel like it right now, this is a good thing. The harness sorts out 90% of hip problems. It worked for my DD (who is now 17 months) even though it went on relatively late.

The second thing is - it will be nowhere near as bad as you are imagining, I promise. (From your OP it seems it's not been fitted yet?) The first couple of days it was on my DD was a bit unsettled but this soon passed and before long we had forgotten what life was like without the harness. When she came out at 6 months she felt all strange and floppy. Your DD will be just as happy in the harness as she is without it, she doesn't know any different.

On the practicalities, I also struggled with bf (generally, that is, not as a result of the harness) and what saved my life was a "my brest friend" feeding cushion. Corny name, but brilliant product. You can lie your LO flat on the cushion and just turn their head towards you. It's a bit pricey but you can get them on ebay. On the baths, we were allowed to take DD to the hospital once a week for a bath - they also adjusted the harness then. But different hospitals have different policies on this, do ask when the harness is fitted. And (shhh, don't tell anyone) towards the end of the time the harness was on, we started to take it off and refit it ourselves to give DD a bath - we had seen it done by the 'professinals' so many times by then. Nappy changing was a bit tricky at first but we soon got used to that too. A good tip is to ask the hospital for a spare harness just in case of poo incidents. Clothes also present a minor challenge - you will need dresses and sleepsuits that are a size too big - DD won't be able to wear trousers. If you are worried the harness will affect your DD's sleeping, don't be. It made no difference whatsoever to my DD, in fact I think she slept worse once she came out of it and could move her legs around. Oh and don't be at all afraid of handling your DD. Nothing you do will affect her hip and I really do promise that you will get used to holding her with the harness on very quickly.

It's a lot to take in, I know. But you're not alone. There are quite a few of us on mumsnet who have been through this and come out the other side with lovely healthy hipped DDs. If you have any questions at all, just post. I look at the health board most evenings and I'll help in any way I can.

OOps let's try that link again www.mumsnet.com/Talk/childrens_health/778393-Pavlik-harness-for-hip-displacia-need-advice-and-support?msgid=15902750

And ... there's been a couple of posts quite recently about the pavlik harness, I can't find them just now but if you do a search for thread titles with the word "pavlik" in them (or possibly "hip dysplasia") you will find some useful tips there.

OK, I'll stop now, sorry for very long posts! But just to say again us pavlik veterans are very very happy to help in any way we can, so keep posting x

Hi no experience with dc's but I had this when I was born. I have had a few times it has caused problems but only because mine was discovered late I was two and a half. I spent time in hospital as a child but all the time I was smiling. I was walking but used a little scooter to push myself along. I had a flare up at puberty but a simple op corrected it. It is not as bad as it sounds.

Thank you so much for the support, it means a lot. DrCosyTiger thanks for the link it is reassuring that it gets better and we can enjoy a relatively normal time of parenting with the pavlik on.

I am currently BF while posting and my dd is enjoying her milk like nothing has changed bless her. I do have the harness fitted as we went back for a second visit to the department in the hospital and had a second scan, this showed the hip dysplasia and we were taken into a room and had it explained what the diagnosis was and the process of the harness including how to change my LO. As she fitted the harness I just wanted to snatch up my dd and run! Madness I know, I want her to have all the benefits of this in the future and as one of your threads mentioned at least she does not have to endure the alternatives like an op etc.

Anyway, it's on and when we got home she fed for around an hour, I changed her part way through which was better than anticipated :-) my lovely mum then came over to see how me and DH were and she had a cuddle (so lovely to see as I was worried about people being able/ not feeling awkward to hold my LO) and after 10 mins she fell asleep. She was asleep for 4 hours earlier! She is now feeding away and I don't know what kind of night we will have, bearing in mind it's almost 1am! I had some lovely smiles from my dd when she woke up too so I hope the transition will be relatively tear and stress free for her. I know it will take me longer.

I would love for her to have a bath but it was not offered. I will ask as we have to go back every week.

Well I will draw on my strength and love (getting emotional now!) to get us through each of the challenges parenting throws at us, this is not the first and will not be the last! My heart is full when my dd looks at me and beams that contented smile :-) x

Hi again Butterflymm it sounds like you are coping very well. Hope you had a good night. I know what you mean about wanting to run away when they are about to fit the harness. As she was about to fit it, I asked the consultant in a moment of panic what would happen if we refused to let her do it? She just looked at me as if I'd gone mad and asked why on earth would I run the risk that my DD would require surgery when I could almost certainly avoid it by having the harness for 3 months. She was right, of course Anyway, I promise you, you will get used to it soon and your DD sounds like she's got used to it already. Another tip I thought of after I posted is that if it's hot, you might want to put pieces of soft lint in the bits of the harness that are quite tight to stop it rubbing against your DD's skin. The hospital had a supply of these that they gave us. Just a thought. Keep posting and let us know how you are getting on. Thinking of you.

I have nothing to add; everybody has covered my tips (particularly DrCosyTiger - hi!). However I shall just add that I too am thinking of you and that I have a DD (3.5) who was in a harness longer than anyone else I've heard of (went on at 8 wks, came off at 11 months) and she is absolutely fine; the playground champ at climbing the big climbing frame. Good luck to you and your DD.

Butterflymum, poor you - a lot of worries in a short space of time.

My nephew (also a breech baby) had a Pavlik harness for about 6 months, and was very happy in it. The biggest disturbance was for a few days when it was removed because he wasnt used to being able to wriggle, and was woken up by his own legs!

He's now a fit and sporty young teenager, the treatment having been 100% successful.

The STEPS website is very good for conversation with parents with lots of detailed hip experience.

Good luck!

Not been on line as just been away for a short weekend break with my DH and DD which was really lovely. It was excellent to spend some time enjoying each other and getting to grips with the harness.

Thanks again to you all for your helpful comments and support - it is very much appreciated. I am much more positive and am settling with the harness now. It does take three times as long to do morning and nightime changes and I am still a bit upset that I can't bath my dd but I have lots of those to look forward to and it's all so my LO can live a full life with comfortable hips :-)

Going to look on the STEPS site to see if any other mums have tips to successful BF while my DD is in treatment.

big thanks 2 u all xx

I BF exclusively while DD was in hers. IIRC to start with I held her sort of normally (is there a "normal" breastfeeding hold?) - she was on her side and I held her by hooking my right arm inbetween her legs. After we got into the swing of things she often laid her on her back and just turned her head towards the nipple.

It did feel weird to start with, as everything else does when the harness first goes on, but it ended up just being "normal".

Am glad you had a lovely weekend and were able to spend some time coming to terms with it. And yes, missing bathtime for a while is a small price to pay for the hopeful outcome. Just to add to the positive stories - my DD (3.6) has learnt to ride a bike this weekend without stabilizers! Am pleased as punch

Ah thanks robino and congrats on the bike success!! A very proud parent you must be. I am loving the now but looking forward to all those exciting firsts and looking back on our journey leading us to those points :-) this is just one part of the many things life as a parent is about and I am getting over the initial shock of it all xx
thanks to you all for your positive stories, I look forward to our future taking each day as it comes :-)

Hi Butterflymm (and a big wave to my fellow pavlik veteran Robino),

So glad you're doing a bit better now. The weeks will fly by. Keep us in touch with how you and your lovely DD get on. I can't quite claim exciting tales of bike riding, DD is only 17 months and not quite walking yet. I think her time in the harness has delayed her a bit on that front, so that's something you might want to bear in mind when your DD is older. But she's almost there, cruising along the furniture very nicely and did a couple of seconds of "look no hands mummy" at bathtime tonight (eek).

Thanks DrCosyTiger and fab about walking developments but will bear in mind developmental delays thank you.

Week 1 is complete tomorrow already so will be going to the clinic to see what happens and am armed with numerous questions that we didn't get to ask/didn't think of before.

BF is really suffering, I can't get the latch right because of the positions we are adopting with the harness (I am concerened about her lying on her side as I don't want to hinder any of the treatment) and I don't want to hurt her. I am very very blistered etc and it's getting increasingly more difficult. I am visiting a BF clinic tomorrow to get advice before we need to call it a day which I am reluctant to do as we worked so hard to get BF established in the first place.

Thanks for your support!

Butterflymm - Have just seen your post. My daughter (first baby) had a (delayed) hip scan at 11 weeks, and was put into a pavlik immediately. Sadly a week later they scanned her again and found her hip was completely dislocated. I thought the pavlik was bad until I found out she had to have an operation and go into full plaster from her waist to her toes for 12 weeks (no baths at all obviously). Anyway, 2 operations and 2 casts later she was put into a brace 23 hrs a day for 6 weeks and then the brace at night for a further 6 weeks - she is on her last few days of that.

Anyway just wanted to say that it is horrid, and a big shock but much much better to get it sorted out now. And hopefully she won't need plaster etc and the pavlik will work.

My daughter is 9 months today, has been out of the brace in the daytime for 5 weeks and was nearly crawling within 1/2 weeks and is now properly crawling and has been for about 10 days, so within 3 1/2 weeks of being out of the brace in the daytime. I was really worried she would be really far behind but she is about the same as the other NCT group babies which is nice. She learnt to roll with the cast on from front to back and even back to front, despite the weight of it and dragged herself along.

Anyway just wanted to share our story and say I know what you must be going through...best of luck with it all

Butterfly just to be a bit contrary - my DD started walking really quickly after her harness; actually beat some of her contemporaries to it. She hardly crawled and went straight into walking. However; her balance was REALLY appalling. Fell over left, right and centre and often in spectacular fashion for ages. Probably until she was about three. I had thought that she just suffered from her dad's and my dreadful clumsiness but now she would appear to actually have a great sense of balance and I wonder how much of her wobbliness was related to the harness and lack of crawling. This is purely anecdotal but is another thing you could bare in mind.

Hi Butterfly, sorry to hear about the bf problems. I was lucky in that sense as while I struggled terribly with bf to start with DD didn't go into the harness until 3 months and by then I'd got the hang of it. I would say again the my brest friend cushion did really help. It positioned DD just at the right height for latching on. But she did have to lie on her back and turn her head which I guess might not work for your DD. How was the counsellor? Did she help? And one week passed already, hope you got on ok at the hospital.

Butterfly, just wanted to add my best wishes to you and your family.

Our DD was diagnosed with dysplasia of her left hip at 10 months, and had to have a "closed reduction" op, followed by a spica cast from waist to knees for 4 months, followed by a brace for another 6 weeks, which she had to wear for 23 hours a day.

I understand exactly how you feel, it is so difficult to see your poor baby going through this. However, within just a few weeks of having the brace off, DD was walking and climbing totally normally for her age, and now at 4 1/2 years old you really would have no idea she ever had anything wrong with her - even the incision scar from the op is virtually invisible, unless you know exactly where to look.

In fact, just a few weeks ago I was chatting to a friend and saying how lucky we were that DD had been such a healthy baby, and we really had had no health worries with her. She looked at me, puzzled, and said, " but what about her hip?"! I had completely forgotten about it!

Good luck with the BF-ing, and just remember you have us here on MN if you need support (and STEPS charity is brill too for advice and support)

Hi everyone, thanks so much for advice, support and sharing! It's given us so much hope and confidence and through it all we are still enjoying our DD so very much.

Well a week now into the harness and at the weekly clinic they say that there has already been an improvement! That is even with the BF position we have needed to adopt. They are concerened about the length of time my DD feeds for in this way as it can be around 5 hours in the eve with small breaks for winding and a 30 min (it still takes a while!) change for bed with hair wash every other night (necessary as DD has tons of gorgeous hair!).

They recommended a formula top up after a good BF which we have tried and she didn't take at first but took some last night. Bit unsure about FF but it's one bottle a day and only to help her position. BF is much more comfortable and the FF last night encouraged some rest in my breasts and they feel much better to feed this morning. Hardly ever given my LO a bottle as only expressed a handful of times. I love BF and want this to continue.

Bf counsellor helped me try some other positions and improving the latch as she has supported others with Pavlik H before and suggested a sitting position (of LO) facing the breast with legs round my tummy. Not 1 for us but might suit others.

We are doing much better and felt welcome at the hip clinic this time - it's a noisy stressful place with a sense of urgency, not conducive to calm sit down conversations about my DDs condition but they felt more approachable this week.

Anyway thanks all again and all stories/tips are greatly recieved!!

:-)

Hi just a little post to say DD is doing well - over two weeks in now and she had to have harness changed at her last appointment for a larger one - small to medium. It was amazing as they took the harness off for a few moments and I got to hold her with it off :-) she felt so soft and squidgey and it was so great to feel her skin while holding her legs as I only get to release one leg in the evening while washing my LO.

Well in less than four weeks it can be off for an hour a day so we can resume bath time - whilst I am couting down the weeks I am still enjoying the now :-)

hope you are all well and happy xx

Hi Butterfly, so pleased to hear it's going ok, thanks for the update. Have been thinking about you and mini butterfly. Did you manage to overcome your feeding issues? Or is that still a problem?

Excellent news Butterfly; they do seem to feel extraordinarily "floppy" when they come out of the harness, don't they?!

Butterflymm - Just saw this post - I've posted in the breastfeeding thread today here with a similar problem. How did you get on with the breast feeding? What position did you find worked? My DD is 13 weeks, so BF is well established but still having trouble adapting and finding a position that works :(

PS Should have said that I was delighted to see it worked out well for you

Trillian - I've just replied on your other thread