Hip dysplasia 13 month old baby

magicface1

Hi there,

Just wondering is there anyone else out there that that could give us some parent information. Our 13 month old baby had a limp since she started to walk and her balance was bad. So yesterday after getting a referral from our doctor to go to crumlin hospital. Anyways after all the hip checks etc they were all fine but the doctor said we will do a X-ray just incase. So the results of the X-ray was that her femur on both legs are not connected to the hip joint they have not developed. Also the hip socket has not fully developed either we were brought straight down to the orthopaedic surgeon and she discussed what the next steps are. So our daughter has to go back in, in 2 weeks where she will be put asleep and her legs pushed up to hip joint and a cast will be on her for 3 months from her tummy to her toes on both legs so she won't be able to walk which will be heartbreaking as she is a really active your baby. Obliviously my partner and I have never heard of this as it is our first child and really don't know what is going on as we try get our head around it. So we are looking for advice or any tips to help would be brilliant.

Thanks in advance,

January

There's a great thread in the Newborns & Toddlers forum of people's experiences with hip dysplasia. I'll post the link for you in a minute.

January

Here's the link - http://www.boards.ie/vbulletin/showthread.php?t=2056017665

theLuggage

Been there with our first also, although she was earlier diagnosed at 8 months, went into a cast from tummy to toes on both sides, called a spica cast. Know exactly how you feel. It's gutting!

Can I ask what operation did they say they would do? As she is 13 months her diagnosis is late and usually that will mean surgery down the line to deepen her sockets. The operation she is having soon could be just to clear out debris in the socket and pop her two bones in place so they aren't dislocated any more. Sorry that sounds scary but it's not really. Honestly kids are so resilient and they really do adjust, and much quicker than you! My little girl was bouncing up and down on the bed, singing, the day after her surgery to deepen her hip socket. She was around 2 and a half and so is flying it now. She had a number of spica cast changes which means going to sleep each time.

I've a few posts on the thread January mentioned above. Just be aware it's a loooong road but she will get there at the end. And it is a totally fixable problem, a s***ty one, but fixable. That's important to remember.

Also some things that spring to mind:

Get a large beanbag for her - essential!

Get a car seat from the Incarsafetycentre.co.uk I think, they are the only place that we could find that do car seats suitable for spica casts.

Your highchair etc might not work with the spica, the beanbag will!

Think about your buggy and the shape her legs will be. We found ours worked, Quinny Buzz, because of the flat sides.

Don't buy anything except the special car seat (or think you can rent it) and the beanbag. Wait till she's in the cast for everything else.

Oh she won't need trousers so lots of tops and socks, the cast will keep her warm enough. Dresses and body vests will need to be a larger size - again don't buy lots before she's in the cast.

Hope some of this helps. PM me if you want to ask anything else.

magicface1

Thanks very much. The above comment really helped. At the moment they will be bringing her in on the 6th of May to try move the legs up and put the cast on. Then it will be waiting to see if they stay. The doctor said that they will probably have to do work on the hip socket as well but he said we will go into that after we see how the first part goes. But he did say that with her being 13 months nearly 14 month and parts have developed. It may take a few operations to sort and get it right which to be honest is very scary. Thanks for all the advice as to be honest the last couple of days have been crazy. We are trying to squeeze our summer in between now and the 6th of May as she will not be walking for awhile. We were at the zoo today the 3 of is had a great time. Our daughter is so full of life at the minute and just wants to be going non stop think that is going to be the hardest part for us to accept.

theLuggage

Well take one thing at a time so stabilising her hips is their priority now. You can worry about the hip sockets later. But in my opinion and experience if you expect another operation for that then at least you're prepared when it happens. The operations sound scary but you'll actually get used to them. The only horrible bit is seeing them go under the anaesthetic and when they come back from recovery.

Try to think of toys etc that might go down well with your daughter when she can't walk around. Don't worry though, they soon crawl around in the cast commando style. Our girl got into everything! Maybe get her to do some crawling as a game before she goes in the cast? Our girl wasn't even crawling going into hers so I've no experience there sorry.

All the best, let us know how you get on.

Vel

Another parent here with a child with hip dysplasia. I too have posted in the above thread that January linked to. I found it very useful when preparing to start our journey. Our daughter was diagnosed at 9 months. She spent 3 months in the spica, a further 3 months in a brace and is now free of everything until September when we go back to see if her socket has deepened or whether she will need surgery. There are some good groups on Facebook where I got lots of information and I also found this website useful. It has a fourm where you can talk to other people. It is UK based but there were a few Irish people on it too. http://www.steps-charity.org.uk/How-We-Help/a-guide-to-developmental-dysplasia-of-the-hip.html

It's hard to imagine it now but all I can say is that once the cast is on and you have to get on with it, for us, it wasn't half as bad as we expected. You definetley have some ups and downs but your little girl will amaze you at how well she adapts.

Our little girl wasn't walking before she went into her cast at 9 months and now at 18 months, just one month out of the brace she is flying around (albeit with very wide legs a bit like John Wayne!) I know I will be devestated if she needs another spica in September but I am also certain that we will get through it.

theLuggage

Vel our daughter needed the op to deepen her sockets but she didnt go into a spica after, straight into the brace. Doctors told us to be led by her as to when she wore it. Think she wore it for one full day, and then on and off for maybe 3/4 more. She'd actually ask to wear it!! Guess it felt comfortable, or took the strain of her hips while mending. She was in it for less than a week and then back up on her feet within the week - amazing to watch. As you say they are so resilient.

Vel

That's great to hear theLuggage. Hopefully if she does need the operation it will be similar to your experience. Do you mind me asking how your daughter was when she eventually started walking? Our little one is on the go properly now for about 2 weeks (she was cruising around on tables/holding our hands etc. before that and was able to do the same when she was in the brace) and I notice that her legs are very wide and that one of her feet is turning in at times and it goes over onto its side. We were told that as she builds the strength in her legs that the turning in should stop. I do know of a lady whose daughter is out of everything now for about 6 months and she still walks with a very wide gait.

theLuggage

Our daughter was fine when she started walking. To be honest I don't even really remember much about it, she walked in the creche first :-( I don't remember any gait issues and definitely no turning onto side of foot.

She did turn one foot in but I think that can be common anyway in kids with no hip problems so just kept an eye on it and it's fine now.

I do remember taking her home and taking off the brace for the first time, myself and my husband were completely freaked out, her legs were turned up towards her head at an angle I didn't think existed! But within time they came down and sat naturally. That happened quite quick, say over two weeks if even.

Her gait is fine now, no problems.

magicface1

Hi guys,

Thanks very much for your replies. This day next week she will be back home fingers crossed. Just a few quick questions if you guys don't mind. After the cast is put on is she kept in hospital over night? Also both my partner (she works full time) and I work (part time) and with our little girl going to need a lot of attention do you think it would be possible to keep the 2 jobs going as it will be a long road with this and also the possibility pelvic osteotomy down the line. Obliviously the first 2 or so weeks will probably the hardest to adjust. We are trying to get our heads around the situation and I think we are getting there. I think the most heard breaking will be not being able to see her walking and running. As she has been active since 10 month. How did you guys get on with the nappy changes. I suppose it will be like a newborn when she comes home first. Once again thanks very much for all your info and it is greatly appreciated.

Vel

I can speak about Crumlin. It is a day procedure so what they generally do is get you to come in at around 7.30/8 am, do pre-op checks etc. and then you wait to be called for the operation. Depending on where you are on the list you could be waiting a good few hours. They try to do the youngest babies first as it is hard for them to fast too long. When she went in we went for coffee etc. and then waited in the waiting room until we were called to the day ward. They brought us in just before they brought her back from the recovery room so we would be there when she got back. The day ward is like a regular ward and you get a bed. They keep them until they are satisified that they are recovered from the aneasethic. We also had to wait while the cast nurse came up to talk to us about how to manage the cast and show us how to change nappies in in. They will also want you to bring up her car seat to make sure she fits into it with the cast. They will not let you leave the hospital until they have made sure that you are able to take her home safely in your car. She had both her operations around 9am and we were out of the hospital by 3pm

Our daughter went into her first cast just as she turned 1 and just as I was about to go back to work after extended maternity leave and she was about to start creche. Nightmare! I took two extra weeks off to get used to the cast etc. and after that she went into creche for 2 days a week and was minded by my parents for the rest of the week. You will be amazed at how quickly they adapt and I don't think you would need to do anything as drastic as giving up a job compeltely to care for her, although you will be able to judge that for yourself. One thing to bear in mind is that they are heavy in them and awkward to hold. I was able to lift and carry her initially but towards the end I was really beginning to struggle. Your daughter is older so she would be heavier again. This may dictate who you need to have around if your wife, for example is unable to lift her. I'm not sure if you mind her between you or whether you have some form of child care but if you do you need to prepare them a bit in advance for what they can expect. Ourt creche have been so supportive and fantastic and she really benefited from going there two days a week and interacting and getting a change of scenery as I was limited with what I could do to entertain her at home.

I also forgot to mention that our little one worked out very quickly how to crawl in her cast and I have even heard of some kids walking in them although I can't imagine that!

theLuggage

And I can speak about Temple St! No overnights for casts, they will wait for a few hours before discharging, to make sure your daughter has recovered ok from the general anaesthetic, and the doctors have come round to you. Also for the first cast they will be showing you how to do the nappies and that. Some of that might be done down in OT and some on the wad. I think it depends how busy the OTs are. They might not have time to go up to you so you'll be sent down to them. You get a leaflet which won't have anything new on it - you'll have seen it all here or on other sites. Exactly as Vel says above, very similar. We didn't get quizzed on our car seat tho.

No need to change any job or minding arrangements.You're right when you say it's like bringing home a newborn, it becomes the new normal v quickly. Just make sure whoever is minding her while you are both working is fully up to date with the information they need to look after her.

Forgot to say also before that the casts are VERY heavy as Vel says, ALWAYS lift/support under her bum. Picking up under the arms alone isn't going to do. You will get used to it quick but I guarantee family and friends etc will keep forgetting. We used to roar at ours :"Under her bum!" every time they lifted her! LOL!

Nappy changes are fine. They appear very daunting but will become manageable. If you have small hands you get on better. Basically a large nappy goes on over the cast. There is a hole in the cast over the bum area and you have a smaller nappy inside the cast. So two nappies, but the one on the outside never gets used so it can last for a day or more depending on the stickiness of the ties. You'll need the inside one to be smaller than what she is in now, because the cast is tight. Pull off the elastic ties because they can catch and there is no need for them, there is no way to close the nappy inside. The tightness of the cast will hold it in place. We would pull out the front and clean, then pull out the whole nappy. Then push the new one in under the bum first and then push in at the front working from corner to corner. Some people flipped their babies onto tummies during it but I never found that necessary. Search on youtube, some videos are v good.

The big thing about nappies is to accept there will be soiling. There will be pee and poo leaks and there is no way you can get it all. Iy sounds horrible but actually we only had about 2 wee leaks and one poo leak over the 4 months and even then they were minor. It'll be easier as she is on solids and the key is change FREQUENTLY! Even better if you know the times she tends to go.

Believe it or not it will become the new normal. I really do think your analogy to a newborn is best but it's not even as bad as that. Really it's the holding and handling of your daughter and the nappies to learn. The rest is for her to learn in terms of getting about. Some kids do walk in them, I know one. Our girl didn't but she was speedy crawling commando style in her cast.

Formosa

Our little one is currently in a spica, week 14 of 18 (counting the minutes!!), she is getting treated in Temple Street by Noelle Cassidy.

She had her final cast change last Monday, always tough as she has to go under general anesthetic for each change.

Anyway, the posts above seem to cover a lot, but feel free to PM me for any advice.

She turned one last week btw, got the cast put on at 9 months.

Formosa

Regarding the query on overnight stay or not , for us in Temple Street we didn't have to but they had told us to be prepared for it in the event of her needing an open reduction (where they need to cut her open to manipulate the femur into place - as opposed to a closed reduction where it can be done externally)...they got away with the closed, although they still had to cut in to free up some tendons, but this was minor and meant she wasn't out too long.

Hope I'm making sense.

magicface1

So guys here goes. Tomorrow is the day for our daughters first op in Crumlin and hopefully all goes well. To say I am anxious is an understatement. Was hard putting her to bed this evening while she walked up the stair and ran around before her long bath. Tomorrow is going to be a tough day but will be worth it in the long run.

Thanks to everyone that has replied to this thread it has helped my partner and I do much.

Will give an update over the next couple of days.

Thanks so much again.

Czarcasm

Hi magicface, I just wanted to wish you, your husband and your daughter the best of luck tomorrow!

I can't really give you any insight or advice on coping with a child who has DHD, but I can tell you that as a 37 year old adult with cogenital hip dysplasia (I'd a click hip that simply wasn't detected at birth), while the next few months will be anxious for you and your partner, you're saving your daughter a lifetime of agony and constant physical pain which will only worsen as time goes on.

I had a ganz osteotomy done at 22 in the Cappagh hospital because I was still too young for a hip replacement, and since then my body is practically riddled with arthritis as doctors are reluctant even at the age I am now to do a hip replacement.

Had the hip defect been detected earlier as in your daughters case (instead of it being assumed I was just bow legged!), the prognosis could've been quite different. It was just unfortunate in my case that it was missed.

I honestly can't fault the medical professionals who have been working on my case for the last 15 years though, all of them an absolute credit to their profession, from nurses to consultants, and I've met a fair few, so I've no doubt your daughter is in good hands, and may I wish her a speedy recovery that she'll be up and about skipping, jumping and running about the place again soon!

theLuggage

Hope today went well magicface1, that the operation/cast went well and there was no delays or that. It's difficult adjusting but it does get better. I'll never forget the emotions our first night home. The next day I spent the morning crying.....then I got up and got on with it. You will adjust and it will get easier. There will be bad days now and then but honestly the time flies in. It seems like a lifetime ago since our daughter was in her cast.