Hip Dysplaysia Support Group #2

[furgurnie]

Thanks Corelly and Madcat for your messages, I am so glad I found this forum!

Corelly, how is your little girl now? Are her hips "normal" and not requiring further treatment? After the spica cast what brace did she go into? How was the state of her legs once out of the cast?

Madcat, how long after your daughter's first op did you find out that she needed another? Was she in a lot of pain post op? How long did she stay in hospital for?

PinkFairy, I feel for you, the waiting is terrible but time really flys and before you know it September will be here. I had to wait nearly 6 weeks from the time we had our appt with pediatric ortho surgeon til date of op (this wednesday), so know what you are going though. I will let you know how we go.

Thanks again guys, chatting really helps!

[karma1410]

Hi everyone. :-)

I have been following your stories since our daughter was diagnosed with congenital hip dysplasia and a fully dislocated right hip about two weeks ago at 11 months. We had our orthopedic surgeon appointment this morning and it wasn't great news unfortunately. She is being scheduled for an open reduction and possibly an osteotomy if the surgeon thinks it is required on the day. We are looking at 12 weeks casting after that which I know is pretty standard and I would guess a brace after that, although I forgot to ask about that.

I had expected at least a closed reduction but the treatment is certainly more aggressive than I was expecting. No matter how prepared you think you are, it still comes as a shock to know for sure that your precious little one will be scheduled for surgery.

I am amazed by the courage and positivity of the wonderful parents in this forum. I can only hope that I am able to handle this difficult time as well as you all have.

[furgurnie]

Hi Karma1410, sorry to hear your news, it certainly does come as a shock. You have come to the right place though! I only joined this forum the other day and already I feel a little better knowing that there is support right here.

Your story sounds similar to ours. We knew our daughter had “abnormal” hips and may need a brace, but when we went to orthopaedic surgeon we found out that her right hip was actually dislocated and required surgery. The surgeon plans to try a closed reduction but it’s more likely an open reduction that is needed.

When is the surgery booked for?

[pink_fairy]

Welcome furgurnie & karma1410 - I'm so grateful already that I found this forum!

Thank you all so much for your supportive messages. Im sure the time for her surgery will go fast as its only 8 weeks away and I have uni and DD's birthday party plans to keep me busy in the mean time!

liddy105: i hope your DD knee is a little better

Madcat: your DD sounds like such a brave and positive little girl: I'm sure you are so proud of her! Good to hear she is back at school, I'm hoping DD will be back at day care around week 3/4 after the op.

furgurnie: all the best for Wednesday, I will be thinking of you and your DD. My DD is scheduled to have the exact same procedure, they will insert dye in her first to see what is in between the bone before deciding what procedure they will do, but the surgeon said because of her age it will more likely be an open reduction.

anyway i better stop talking now...

[Miss.September]

Corelly, how is your little girl now? Are her hips "normal" and not requiring further treatment? After the spica cast what brace did she go into? How was the state of her legs once out of the cast?

Furgurnie - DD is almost 16 months now and she has recovered really really well. She hasn't taken her first independent steps yet, but is walking around hanging onto us and furniture, and its now just a build up of confidence. She learned to crawl "properly" once out of the brace, but could commando crawl in it and she also learned to roll over while in the brace. She will require visits to our surgeon until she is 14, the first one being in May next year, and then every couple of years until 14, provided no problems arise. After the spica, she went into a Rhino Cruiser, which is plastic and foam. It's a little bit flexible, and kids who can walk before going into one, can usually walk while in it. It goes over the clothes too, which makes life a lot easier. Her legs were okay after the cast was removed, we managed to avoid bed sores! Her skin was very dry, but only needed a couple of days of moisturising before they were soft and chubby again. At our surgeon's visit, where he told us that the brace could come off (so many tears on that day!), he also told us that DD was in the worst 10% of cases, which is why her treatment went on for so long. I hope all of this helps, keep firing questions at us.

Karma1410 - Hope the surgery goes well and the cast time flies. Keeping my fingers crossed for you and sending you positive thoughts and vibes.

I also wanted to say to anyone starting on this journey - trust your surgeon. If you like him/her, of course. My MCHN told me that if DD wasn't walking by 15 months, it was an issue and she needed to know about it. She completely ignored the fact that from 7 weeks to 11 months, DD's legs were restricted. I spoke to our surgeon about it and he said that there are some kids who, even with normally developing hips and bones, don't walk until they're 22 odd months and not to worry about it. So I'm taking his advice and I thought that MCHN was a little unfair to put the worry there considering the circumstances. You will get loads of advice from different medical professionals, learn who you can trust and the others, well, just smile!

And a question from me too............to the parents who have had a child with hip dysplasia, have you had another baby? Did it also happen to the next bubba? If anyone is reading this and has a story, please share. TIA.

Corelly x

[jacksnjeff]

Hello, I hope you don't mind if I join this thread?

My brief story is, I am a mummy to 2 girls. My first born is turning 4 and is totally fine, my second born has just turned 1. Our journey began in January this year when I noticed that my then 6 month old had one leg longer than the other. I took her straight up to our GP who agreed it wasn't right and organised an ultrasound. We saw our Paed Ortho and he booked her in for surgery the next day. Mind you, our Dr is very conservative. We had a closed reduction and an adductor tenotomy. We were very lucky to be in the Spica for only 6.5 weeks. We have been in the brace 23 hours a day since coming out of the Spica mid March. At our last appoint in May, her hip was stable which was great news, but there wasn't enough growth, so have remained in the brace 23 hours a day still. Our next appoint is 17th August which I am already so nervous about.

Look forward to getting to know you all and hearing about your journey and what to expect, or trying to answer any newly diagnosed with our experience to date and what worked and didn't work for us.

Warm wishes
Jackie

[furgurnie]

Hi everyone,

Welcome Jackie, I hope that your appt on the 17th goes well, fingers crossed that your DD can be brace free from then on. What brace is your baby currently in- a Rhino Cruiser? It must have been such a shock to find out she needed surgery the very next day after your ortho review! It feels like we have waited and waited for this op.

Corelly, it won’t be long before your daughter is walking everywhere- it will be such a wonderful feeling to know that what you guys went though was worth it. I like the sound of this Rhino Cruiser brace, hope it’s the one Emma will have after her spica.

In regards to MCHN, I have already changed mine once, I agree, sometimes you do just have to smile and ignore there advice! My first MCHN told me to put Emma (a newborn at the time) in a room and let her cry herself to sleep, even if this takes hours! She then proceeded to tell me that I looked like I’d just walked out of a morgue as I was so pale!

PinkFairy, thanks for your message. Enjoy the planning of the birthday celebrations, that will be a good distraction from the upcoming surgery I’m sure.

The next post will be when I get home with Emma after her op. Thank you all for your support so far, I am sure I will need more of it in a few days time.

Take care.

[jacksnjeff]

Thank you for the welcome.

Hope today has gone to plan and everything went well?? It is such a tiring and emotional day. My daughter is in the Rhino and it is certainly doable and you get so used to it. She has now been treated for more than half her little life. It was a shock, as from the first ultrasound we were told mild and a brace for maybe up to 12 weeks and then when we go see the Paed Ortho, he did another ultrasound and said it is worse and he will book us in tomorrow.

Did your DD need open surgery?? What hospital did you go to?? How are you and your partner holding up?

Hope everyone else is travelling well?

Jackie

[karma1410]

Furgurnie - I hope everything went smoothly and your little girl is recovering nicely. Hugs for Emma and her Mummy too. Once you are settled back at home, if you have any hints or tips about handling what must have been a very tough day, I would be most interested to hear them.

We had our surgery date confirmed today as the 11th August, and I feel sick just thinking about it. I am glad that we don't have to wait until the 26th August though as I would tie myself up in knots more than I already have. And the sooner that we start treatment, the sooner our baby girl will be on the road to recovery.

Does anyone know if we are allowed to ask on here whether anyone has used a particular surgeon and/or hospital?

Jackie - What a shock for everything to have happened so quickly for you. I feel like everything is moving so fast and I have had time to research and prepare myself as best I can. I can't imagine having had only one day to prepare like you did.

We have a big 1st birthday planned for our daughter's birthday on 8th August so I am trying just to stay focused on that for the moment. We also moved forward her 1st birthday cake smash photo session to last Wednesday in case her surgery was earlier than anticipated. I am flat out editing her photos from the cake smash...it's a welcome distraction at the moment as it's hard not to think about what is ahead for our baby girl. I do the occasional client photo session but this was my first cake smash and it was so much fun! I'm so glad that we were able to do that before her cast goes on as they will be great photos for her to look back on.

I hope that the precious bubs are all doing well and continuing to smile despite these challenges.

Donna

[Miss.September]

Jacksnjeff - know those nerves feelings well. Hope you get some great news at your next appointment.

Furgurnie - The rhino cruiser is a good brace, DD seemed really comfortable in it and when she came out of surgery when the cast was removed, I was very relieved to find her in it. It became my focus during that second time, I never considered how the plaster would be removed and that she'd have to be knocked out a second time, so I just sat, dreaming about what her chubby little legs would be like plaster free. You're sounding really positive so far, hope the op goes really well.

Karma1410 - Our surgeon was Mark O'Sullivan and DD's surgery was at Cabrini at Malvern. Lovely hospital, lovely staff (well all but one nurse, but anyway!). When the plaster came off we went to Mercy I think and the staff were wonderful there too. Oh, all in Melbourne, in case you're interstate. Have a wonderful 1st birthday with your daughter, sounds like the cake smash was fun!

[karma1410]

Corelly - We are booked in at Cabrini Malvern too, so I am glad to hear that you were pleased with the hospital. Our surgeon is Marinis Pirpiris.

Can I ask why or how you chose Mark O'Sullivan as I have seen his name a few times now? I'm not sure how you ever know whether you have picked the right surgeon and I guess that is one of the unknowns that worries me. We haven't had a second opinion in terms of the treatment plan and I'm wondering now whether I should be trying to get an appointment with Mark O'Sullivan.

[Miss.September]

Mark was the surgeon we were referred to by the paed we were referred to by my ob. So a lot of referring going on! My GP though, her kids were also treated by Mark and she was singing him praises when she heard who we were seeing. He really is very good. But we had nothing to go off and just had to go with the gut instinct - mine was that I liked him immediately. We never sought a second opinion. In relation to Cabrini, and probably all hospitals, we were required to show the nurses our car seat, which was rearward facing, to ensure that DD would fit properly. We had to purchase a crotch extension strap for the seat to lengthen the belt so it would reach over the cast. We were told to get it from the RCH equipment distribution centre, off Gatehouse Street. As you drive into the carpark, before you go up the ramp, DH tells me its on the left. Cost us about $28, if memory serves. The strap needs to be fitted before your baby is discharged from Cabrini. Ask your surgeon if this applies to you because I don't know if it is relevant if your bub is forward facing. HTH.

[jacksnjeff]

Hello,

Corelly, it certainly is a very anxious and nervous time, these Dr's appointments. Have you been given the all clear for your daughter?? What sort of treatment did your DD have?? Right now, we just feel like it is never ending, and it gets so disheartening..............

Karma, it is alot of trust we place in Dr's and we also hope that we have made the right choice/decision. We were referred to ours by our GP that said she would use him if this was her daughter. I love our GP and hearing those words gave me comfort and then reading about him on the internet. If you have any doubts, I would probably seek a second opinion as no one loves or knows your baby like you do. Good luck!

Are there any Sydney siders on this thread or anyone that is being treated at The Children's Hospital, Westmead???

Have a good night,
Jackie

[Miss.September]

Jacksnjeff - we've been given the all clear. DD doesn't have to visit the surgeon until May next year and if all is still good then, visits will become every couple of years until she is 14. DD's story is that the midwife found she had a clicky hip at birth. Four days later the hospital paed found it to still be clicky so we were referred for an ultrasound at 2 weeks. The ultrasound people said she was too little to do then and DH and I already had the heebie jeebies about the paed so we left and waited to see my ob at the six week check up. We got him to refer us to a paed, saw him the next week and then it felt like it was rush rush over a handful of days. The paed couldn't feel anything was wrong, so he sent DD for an ultrasound where it was found that one hip socket was virtually non existant and the other was shallow. Into the surgeon's rooms, into the first brace, the Dennis Browne for 24/7 for 4 weeks with the weekly movement of the brace. At the end of that it was found that there was no improvement so she had an open reduction and into the cast for 6 weeks (we were lucky that the anethesist that the surgeon wanted to use was going on holidays so our cast came off at 5 weeks!!) The cast came off at the end of August and she was in the rhino cruiser until February where her hips were deemed "perfect". She's now 16 months, can sit, roll, crawl, scoot on her bum and walk while holding furniture and her walker. So that's our story!!!!

While I'm at it.......I want to really say thank you to everyone that has helped me here in this group. I had very little support at home. DH was at work, my most reliable family live over an hour away and my mum, normally always there for us, was on a six month overseas trip, leaving the week before DD was born and returning two or so weeks after the rhino cruiser went on. Without this group, I would've gone mad. So to those wonderful people who helped me in the early days, heard my tears and sympathised with the pain we were going through, I really thank you from the bottom of my heart. MummyNaomi, an enormous thank you to you, you are one special lady. So for anyone going through this now, I will be here, because I know how invaluable the tips that I got in those early days were and how hard it would've been for me without it.

Corelly x

[karma1410]

Here's my little rant for the day:

I can't believe that after one appointment with the surgeon where they throw all sorts of bad news and statistics at you, you don't get another opportunity to ask any questions until the day of the surgery! I have a couple of questions that I really want answered in advance of the day (like whether they use CT scans for example, how many of these procedures the Dr has performed, whether her osteotomy if required will need pins and plates or will just be a shortening etc) and the receptionist keeps telling me that even if she leaves questions for the Dr, most likely they won't get answered. The only option she has given me is to book another whole appointment next week, just to ask a couple of questions that could be handled in 5 minutes on the phone.

Did anyone else have this problem? I am so uncomfortable handing my baby over for surgery without feeling like I am fully informed, but maybe it would be the same no matter which surgeon we see. Is this standard or have others had a different experience to this? Have you been able to speak to your surgeon by phone for any quick follow up questions?

I am just so frustrated and now feeling quite uncertain about our choice of surgeon. Perhaps though this would be the same no matter who we see. I just want to make the right decisions for my baby girl.

Sorry for the rant but I felt like I was going to explode if I didn't get it all out.

[karma1410]

Oh, I forgot to ask whether any of your brave bubs have had to have CT scans? Statistically there is a 1 in 500 chance of a 1 year old developing cancer at a later stage from exposure during a CT scan, and that statistic is scaring the pants off me. I really want my daughter to avoid a CT scan if at all possible but I can't even get an answer from the doctor as to whether she will need one. I might be worrying for no reason. Aaaarrgghhh!!

[Miss.September]

Karma - we had a wonderful receptionist named Sharon at Mark O'Sullivan's and she would answer anything and even put you in touch with other parents who Mark had treated. Unfortunately, Sharon left but I'm sure he would've made sure that there is someone else there to throw questions at.

DD had an MRI one week after the op, it was apparently the best way to see if everything had worked, and then so many x-rays after that, that I've lost count. I know what you mean about the cancer fear, but I just had to grin and bear it and hope that through this she has earned brownie points in the health department. The MRI didn't take very long at all, if that is some consulation to you. At RCH, they gave DD a sedative which helps them go off to sleep because they need to keep still.

Maybe make that extra appointment just to get some answers and have that piece of mind that you know exactly what is going on. Write everything down before you go, if you do.

[karma1410]

Thanks Corelly. You are such a wealth of information and I really appreciate it :-)

I actually rang after my last post and spoke to I think Lisa at Mark O'Sullivan's office. She was so, so lovely. Unfortunately though we can't get an appointment next week before our surgery date and then the surgeon is on holidays. Even if we could get an appointment, Lisa indicated that we wouldn't be able to get a surgery slot until late September which is too far away given that our little girl is turning one already.

If it is an MRI or X-Rays I will be okay with that as I know that there aren't too many options in a case like this. It's more the CT that I am concerned about. I would feel so much better if I could just get an answer to that question from our surgeon. It looks like we will have to book an actual appointment next week with our surgeon just to get a few answers. At least then I might feel a little bit more informed.

Thanks again for the great info and advice that you have provided. :-)