Development Dysplasia (DDH)

lolli

angelfire9 wrote: »

Home from Croom
Aisling got the all clear :D:D:D:D:D

Nothing at all wrong with her hips Thank God
Bloody PHN had me worrying for weeks

SO relieved!

Best of luck to Melion, jimbob_jones and others waiting with their kids to get sorted out
And thanks for the advice guys n gals!

Aww thats great news!! I am delighted for you.

Melion

lolli wrote: »

Urgh, I bet you would rather it was over and done with. What are they going to do, will they put her in traction to loosen the muscles?

No traction, i wouldnt have allowed them do it anyway, not after the stress it caused back in February(she was supposed to be in it for 5 days, she lasted less than 30 minutes).
We just have to leave the brace off her a few hours a day and hope it works itself out. Had her swimming today, definite improvement in her movement over the last week so hopefully everything goes ok and the operation happens on the 30th.

lolli

Saoirse was in traction for ten whole days so thats why I was hoping they wouldnt do it to her. I found that the most stressful thing ever. 10 days of HELL!

The swimming is great isn't it, it really helps to improve the movement. I really hope it'll all go ahead now on the 30th and get it over and done with.

Melion wrote: »

No traction, i wouldnt have allowed them do it anyway, not after the stress it caused back in February(she was supposed to be in it for 5 days, she lasted less than 30 minutes).
We just have to leave the brace off her a few hours a day and hope it works itself out. Had her swimming today, definite improvement in her movement over the last week so hopefully everything goes ok and the operation happens on the 30th.

Melion

Caoimhe is booked in for her operation tomorrow morning, pain in the arse because she started walking again at her birthday party on Saturday We decided to have the party a month early so she could enjoy it without being restricted by the cast.

lolli

Best of luck Caoimhe x

Melion

Forgot to update this:

Caoimhe had her operation at the end of June, she had her cast removed last week and the wires were removed today. She coped very well with the last cast. She is due back in Croom in 4-5 weeks for the operation on her right hip. Only one problem, her surgeon is being forced into early retirement by the HSE. Its an absolute joke, they cant afford his money anymore so are basically telling him that he HAS to retire. They cant afford to train anyone to take his place to basically we are in limbo. We dont know whats going to happen with her right hip now.

This country depresses me so much.

lolli

Oh my god thats crazy! Saoirse attends Crumlin and they have been great. Could she maybe get a transfer to there?

Melion wrote: »

Forgot to update this:

Caoimhe had her operation at the end of June, she had her cast removed last week and the wires were removed today. She coped very well with the last cast. She is due back in Croom in 4-5 weeks for the operation on her right hip. Only one problem, her surgeon is being forced into early retirement by the HSE. Its an absolute joke, they cant afford his money anymore so are basically telling him that he HAS to retire. They cant afford to train anyone to take his place to basically we are in limbo. We dont know whats going to happen with her right hip now.

This country depresses me so much.

Chuchu

Hi all I forgot to update during the summer... we decdied to get a second opinion and are now attending Crumlin. After much humming and hawing we're thrilled we got it as they put surgery off until next year, as there is still a slight chance seh could 'grow out of it' as she is a marginal case. Even if she doesn't we're delighted as she'll be over 2 and a half then and a bit better able to deal with an operation we hope, at least able to watch DVDs and stuff! Hope all the rest of you and your little ones doing well. PM me if anyone want more details.

keisha30

I understand how you all feel.:(
I could hardly belive it when we were told our 17months old had to be cut apart...


My son was born with dislocated hips.
He wore Pavlik harnesses from the second day of his life - 24 / 7 for 8 weeks.
After 8 weeks, ultrasound showed improvement and we was told that we only need observe it.
He had his 1st X-ray taken when he was 6 months , which showed that they are still shallow .
When he was 8 months the doctor recommended to wear abduction brace - 24 / 7 for 8 weeks .
Subsequent x-ray showed no improvement .
But we were told to wait until he will be 17 months and then doctors will decide what steps to take next .
When he had finished 17 months, called us for visit, another x-ray showed no improvement, still shallow.
doctor decided that he will need an operation /open reduction. And wants to perform in the coming weeks.
We have Consulted with another doctor. ( different country )
And to my surprise another doctor said the operation in such a small child is way to early. Because the defect is not huge.
And with his age that the operation would be necessary if the hips were still dislocated. And they are not. Suggest to do X-ray every 6-8 months.


So now I'm confused and don't know what to do ?
Of course I don't want my baby goes under the knife if there is no need for it . But in the other hand , of course I want him to be a healty baby .
My DH wants to wait ...

btw we are in temple street hospital.

Loonie

Who are you seeing in Temple Street? I was in with Dr McCormack during the week, and have found him to be really helpful at answering all my (sometimes stupid) questions.

My understanding of an open or closed reduction is that it is only required if the hip is out of place. From what you've said, it isn't. To remodel the hip sockets, it's called an osteotomy, where they cut the pelvic bone and move it around. We were told they don't do that before 18 months, as the socket is still growing on it's own until then.

If you don't understand what the doc wants to do and why, I'd be sure to ask questions until you are comfortable. Don't say yes to something you don't understand. Maybe try to talk to someone else in TS or even see if your GP will refer you to Crumlin for a second opinion?

I had come back to give an update on my daughter. She had a closed reduction at 11 months, spica for 4 months and brace for 3, and we've been given a reprieve for the moment. No more surgery needed but they will monitor her as she continues to grow, it's possible she might need a slight correction in the future. We're enjoying having our cuddly girl brace free!

lolli

Hey everyone!

Sorry that your children are going through this at the moment.

We were back in Crumlin recently and my daughter needs to have an osteotomy and then back into a cast again for a few months. I am really upset over it as she has started walking and shes so happy with herself.

Its hard watching them go through it isnt it.

keisha30

Our doctor is Dr. Paul Connolly.
consultant thoroughly explained everything to us.
Osteotomy I meant, sorry to not make myself clear.
Just do not understand why the doctors here wants to operate now and those abroad consider , that maybe is worth to wait

keisha30

lolli
Im so sorry
how old is your daughter ?

lolli

Shes 21 months now... this has been going on for 14 months for her now!

Loonie

keisha30 wrote: »

Our doctor is Dr. Paul Connolly.
consultant thoroughly explained everything to us.
Osteotomy I meant, sorry to not make myself clear.
Just do not understand why the doctors here wants to operate now and those abroad consider , that maybe is worth to wait

I'm not a medical professional, just someone who's been through similar!! If your sons hips are in place but shallow, then I don't think there shouldn't be any real harm in waiting a little while and seeing if they improve on their own. Is he walking yet?

Personally, at my daughters checkup last week that was the point I was going to take if they suggested surgery. I would prefer to wait until her hip has done all the growing it can before intervening surgically. From what I've read the hip socket is fully formed at around 18 months. I think there is also a 'window' where the surgery would be most successful, but that window might be a few years. Before 4 maybe? I'm not sure on that.

Each doctor has their own techniques, expectations and procedures, and talking to a few helps to give you a better idea of what the options are. Did Connolly say that waiting is an option? Does he think there's any possiblity of improvement if it hasn't improved over the last 10 months?

Melion

So Caoimhe is back walking again. We were back with Dr. Burke last week, he is happy enough with her progress, although she still hasnt got full movement in her left hip. It is getting better though which is a good thing. As for her right hip, he said it is in better shape but will still need an operation which will probably take place next April/May(She'll be nearly 3).

We were also with a specialist in Dublin a few weeks ago at the request of our solicitor(We are trying to see if there is a case for medical negligence). He told us that all the specialists in Dublin have been waiting for a long time for a case like this to come along, if we are succesful then it will change the way kids are examined for DDH at birth which if it happens will be amazing and i will be proud to have had anything to do with it. He explained that if we were in Germany then me and Caoimhes mother would be facing a prison sentence for leaving the Maternity hospital without having her hips scanned. This ridiculous "turkey" method is so out-dated it is ridiculous and it is because of this that my daughter has gone through a horrible time since last February.

Loonie

Melion wrote: »

We were also with a specialist in Dublin a few weeks ago at the request of our solicitor(We are trying to see if there is a case for medical negligence). He told us that all the specialists in Dublin have been waiting for a long time for a case like this to come along, if we are succesful then it will change the way kids are examined for DDH at birth which if it happens will be amazing and i will be proud to have had anything to do with it. He explained that if we were in Germany then me and Caoimhes mother would be facing a prison sentence for leaving the Maternity hospital without having her hips scanned. This ridiculous "turkey" method is so out-dated it is ridiculous and it is because of this that my daughter has gone through a horrible time since last February.

That's really interesting, Melion. Can you summarise what happened with your daughter (I could dig through 9 pages, but I'm not feeling that adventurous). My daughter was missed until a physio noticed at 10 months old. She was even scanned at birth. I'm due my second next year and my DD's hip doc sent the maternity hospital a letter that said (to summarise) 'you screwed up, don't do it again'.

Melion

Loonie wrote: »

That's really interesting, Melion. Can you summarise what happened with your daughter (I could dig through 9 pages, but I'm not feeling that adventurous). My daughter was missed until a physio noticed at 10 months old. She was even scanned at birth. I'm due my second next year and my DD's hip doc sent the maternity hospital a letter that said (to summarise) 'you screwed up, don't do it again'.

Hey, sorry for the delay in getting back to you.

Basically from birth, Caoimhes mother was worried about her foot as it was turned out slightly. She kept pushing to have that checked, it was checked 3-4 times and was told it would be ok, she'd "walk it off".

In her first 18 months she had her hips examined 7 times, on another occasion she wasnt even examined as the nurse who should have done it just wrote "Equal Creases" in her medical history book indicating that she believed that no checks even needed to be done.

In January '11 we took Caoimhe to a specialist over her foot as her mother didnt want to let it go(a paediatrician who had already examined her hips twice and said they were fine). He told us that she had a slight problem with her foot, Caoimhes mother then mentioned that her stomach had been sticking out a lot for a few months(she wasnt a fat child but her belly really stuck out). He told us to strip her off and let her walk up and down his office and the corridor outside. After 3-4 minutes of that he told us to go down for an x-ray straight away, we were back in his office within 5 minutes and he told us she had 2 dislocated hips and it should have been detected long before that. I quizzed him on why he hadnt spotted it since he had checked her twice and his story changed, he started saying how hard it was to spot in young babies.

She has been through absolute hell in the last 12 months because of the pathetic "treatment" she received when she was younger. They tried to put her in traction last February, it was supposed to last 6 days, she was let down after 30 minutes because of the trauma it was causing her. She has been in and out of hospital more times in the last year than i have been in my 28 years. Even now, she is walking and running around like any 2 year old girl should be, but she is back in hospital in May for surgery on her other hip. That will restrict her to a cast for the 2nd summer in a row. Its putting a delay on everything in her life. She cant be toilet trained as it would be a waste of time.

And even after everything she has gone through, she still wakes up every morning with a smile on her face. When she was in the cast, she never let it get to her or beat her. She found her own ways of getting around the house. She really is amazing.

Chuchu

Thanks for sharing your story Melion... it is heartbreaking. But what a brave girl you have! We are facing possible surgery this summer... will finally know this March if it is to go ahead or not.:( Best wishes to you all for a better 2012.

keisha30

just a quick update about my son.
He had a surgery on 26 of january
Both hips .Salter osteotomy in temple street hospital . and no cast!?only a brace !, have no idea whether this good thing or bad ...
I was told ,even in a day of the surgery that he'll be in a spica cast
I hope that brace will work ...
they even let us remove it for bathing after 7-10 days post op !?
but we didn't and we not going to do this , us we are scared to do so .
I hope it heals nicely .

keisha30

Hi everyone!
Don't know if anyone still checking on this thread

Btw. , I have two spica chairs/tables for my son .
We are using one at the moment .
But If anyone needs a chair , one is waiting
but please pass it on !
I hope they can help people out as much as they helped us.
I know how hard is to find something like this in Ireland . that's why we builded two of them.
we are from Dublin
best of luck to anyone !

that's one of the chairs (2nd is not painted )
http://imageshack.us/photo/my-images/28/alanschair.jpg/

lolli

keisha30 wrote: »

just a quick update about my son.
He had a surgery on 26 of january
Both hips .Salter osteotomy in temple street hospital . and no cast!?only a brace !, have no idea whether this good thing or bad ...
I was told ,even in a day of the surgery that he'll be in a spica cast
I hope that brace will work ...
they even let us remove it for bathing after 7-10 days post op !?
but we didn't and we not going to do this , us we are scared to do so .
I hope it heals nicely .

Hey Keisha! Sorry I hadnt looked at this is a while. Hope your son is doing well and that everything is healing. My daughter is having an operation in September..... 25 months after her original hospital stay. Its certainly taking a long time to get her hip fixed, im praying this time it'll be fixed!!

How are you finding it at the moment?

Melion

We were in Croom again last Thursday. Caoimhe is booked in for the osteotomy on her right hip on March 14th. We were told that she might need an operation on her thighs after this. Thankfully Dr Burke said that it wont be necessary. Has anyone any experience of a near 3yr old in a Spica? Im dreading the thought of it.

Melion

We're in this Wednesday for Caoimhes next and hopefully last operation. Anybody have any experience of a near 3 yr old in a spica cast?

Loonie

Melion, not something I've experienced, but I had followed a blog http://aussie-tatteredangel.blogspot.com/ where a toddler was in and out of spica, that might help you a bit. Good luck on Wednesday.

Melion

Interesting:::

http://www.irishtimes.com/newspaper/ireland/2012/0322/1224313702573.html

lolli

My lady is having her osteotomy in September. Its such a long drawn out process!

Piddin

Hi there,
I'm not sure if this thread is still running but maybe someone out there can help me?
I brought our little 7 month old daughter Lauren for her routine developmental on wednesday and all was fine until I was about to leave and I happened to mention to the phn that she seemed reluctant to put her weight on her legs!!!
The phn immediately said to strip her off again and put her back on the changing table where she noticed that her left leg is slightly shorter than the right and that the creases behind her knees and buttocks are not aligned and she also has extra creases to the left of her groin area.
Well needless to say I nearly died on the spot as you would think i would have noticed this especially as this is my fourth child!!!!
The phn said i should go to my gp asap and get a referel for an xray. So I went to the gp first thing thursday morning and was very glad to hear that he used to be on the 'hip team' in Crumlin and recommended that we only go there. He sent an urgent fax referal to them for an xray appointment (as they apparently dont do walk in xrays!).
So now we are in total limbo unable to sleep and worried sick!! Does anyone have any idea how long we should expect to be waiting for an xray and any other advice?
Thanks and I hope all your little angels are doing well!!

BAwagon

Hello Piddin! Did You get the X-ray result?

I thought to share Our story as it might helps to others.

Our first baby girl was diagnosed with DDH when She Was 4,5 months old.
Left leg dislocated.
Xray was done on the 18th of May and They called back the next Friday the 25th to double check with ultra sound. Dislocation Was obvious and got appointment to see Dr. William Curtin in Galway. First visit Was scheduled for 6th of June when He said closed reduction needed ASAP. Unfortunately there Was no appointment for operation before the 28th of June. I felt it Was very long time ( 1 month) to start treatment.
During this month We did some physio to avoid Her hip getting too tight.
Closed Reduction went very well , Dr. Curtin said He is happy with everything at this stage. Our baby Was a bit upset when came out of anesthetic but after about an hour felt to sleep again and when She woke up She was the same smiling, happy baby as ever.
2 weeks later ( 11th of June) on the first follow up it turned Out the head of the femur is started to slip Out again so Dr. Curtin recommended to do the closed reduction again. Next morning 8.00 AM Galway University Hospital again. Closed reduction went well again ( except this time She didn`t have any problem after anesthetic).
Now We are waiting for follow up on Wednesday next week the 25th. fingers crossed now because if it won`t work again then She`ll need the big operation later.
Anyone went thorough similar ?

jimbob_jones

Hi Folks,

It has been a while since I posted our story of our daughter Megan and her experience with DDH.

Can't believe its over a year since I posted in the thread.

Anyways in total Megan had a tendonotomy, a closed reduction and an open reduction, 4 rigid hip spicas and one soft cast, which was believe it or not worse than the rigid one but anyways, in October of last year Megan came out of the soft cast and we were told to come back in January to see how she was getting on.

Well she loved her new found freedom and there were quite a few laughs at the way she would scooch around the floor on her behind, but I digress...

January rolled around and we thought that we were in for good news as Megan was doing well. After the X-ray it showed that her hip socket was still too shallow, and within two days we had an appointment for a Salters Ostetomy, I think thats how it's spelled. She would need pins and wire to hold it all in place. Needless to say we were at our wits end but seeing how quickly Megan recovered, two days later she was smiling and laughing and trying to figure out how to get out of the brace that she was in.

Thankfully after the salters Megan didnt need another spica the doctors were happy with how the hip looked, and the pins and wires are absorbable so fingers crossed no further operations are required.

We have had two check ups since the operation and the docs are happy with her progress so far, so now we are playing the waiting game and hoping that her next checkup in December will yield some good news.

As for Megan herself, well the cast may have slowed down her walking but it didnt stop her developing in otherways and she is a little cheeky monkey and talking back to us already .

Anyways, I can appreciate what the parents from the forum are going through and have gone through. Thanks a million to one and all for sharing your stories.

Thanks J.