Hip Dysplaysia Support Group

[Annabelle's mum]

Thanks Bertie,

I appreciate your reply. To be honest i have felt a little alone in this journey. I think this support group is just what i need, just to know there's someone i can turn to that understands. My husband is great although i am the one that keeps life ticking along smoothly for us so i will naturally be the one that needs to figure out what products and how to keep it going smoothly with our upcoming challenge.

I know that i should be really thankful that it was diagnosed early, especially as the surgeon says that if she was checked now it would not be picked up as her hips "feel" normal when a manual check is done. I can only imagine how hard it must be with an older baby that has already started to crawl.

Thanks again and good luck with the cast removal, you must be so excited.

Kind Regards,
Sara
x

[nicoli]

Hi all

I haven't been on here for a while as I've been busy with 6 week old Xavier (and Scarlett).

Sara - I am sorry to hear your story. I think every mum who has posted to this forum knows exactly how you feel at the moment. I have foun this forum such a comfort. Just knowing that there are others experiencing the same thing really helps. Other people tell you that you are lucky if it was oicked up early etc but all you can think about is the loss of what you had hoped for your daughter. My daughter Scarlett (now 2) was in a pavlik harness from 3.5 months then a dennis brown brace up until she was 6 months, then she wore it at night only until she was 22 months. She is now brace free but we need to have annual checks and she may still need an operation before she is school age. I can't imagine having a baby in a cast but as I'm sure you've read - plenty of people have done it and survived. I'm sure the time will fly by.

We go to have Xavier's hip ultrasound next week to check that he has no problems. Fingers crossed.

Nicole

[Annabelle's mum]

Hi Nicole,

Thanks for your support. i received the details today for her surgery and thankfully they advised that she is booked in to have the cast off on the 11th Nov. i know more plaster may have to go on after that as the surgeon mentioned potentially a broomstick plaster going on but right now i'll focus on the body cast coming off on the 11th.

All the best for Xavier's ultrasound next week, i'll be thinking of you

sara
x

[wysiwyg]

Hope everyone else's bubs are doing fine.

We went for our second ultrasound on Friday and too my amazement they said the hips have improved so much can start weaning DD off the Denis Browne brace, so she is now down to wearing it 15 hours per 24 (so for overnight and day sleeps). I was so surprised as she has only been in it from week 7 to week 17 and her left hip was considered severe and I was expecting at least another 6 weeks in it full time.

Is so great to have it off, and see her able to lay flat without he legs suspended in the air, her legs still flop out in the same position as were in, in the brace but she is starting to move her feet up towards her face which she couldn't do before. Hopefully she will roll soon and start to bear weight on her legs more (they said this would be good for the joint).

She feels like a different baby to carry though and need to be a bit more careful I think as is so much more wriggly, and changing the nappies I still forget sometimes that don't have to slide it through the back of the brace. When she is wearing the brace I can put it on over her clothes now which makes it easier.

We are flying to UK on Saturday - I am intending to keep the brace on for the flight (over clothes so can see it when go through x-ray) was wondering if anyone has any experience with DB brace and flying whether there is any swelling of the legs on plane etc?

[Annabelle's mum]

Hi Nicole,

How did you go with Xavier's ultrasound? Annabelle had her surgery which ended up being open and now she's in her cast for 7 weeks. the poor thing. Thankfully i had researched thoroughly so i knew what to expect but her dad hadn't and he was so shocked and really upset.

For anyone that is about to go what we went through here are some tips:
1. Go to Royal Childrens Hospital prior and organise the extension strap that you will need for your car seat. Bring the car seat with you as there are two variations.
2. Tena Goodnights are a much better option than the newborn nappies for inside the cast. Your baby can wear them all through the night without leakage (no. 1's).
3. If you use the right product on the inside you can use a product like Tena fix on the outside. It is made to hold the pad in place. My 12 week old wore an ex-small but could have gotten away with a small.
4. Purchase a bean bag for when you are at home and have a spare doona on hand to bundle up for your baby to lie on.
5. Determine how you will need to adjust your pram to fit the baby and cast in. you may need extension straps for that too.
6. Whilst you're in hospital don't wait for the nurses to come to change your baby's nappy. You take control and ensure it is done every 3 hours at first.
7. Bring with you to the hospital vests that do not fasten underneath and long sleeve tops.
8. Free up your time. Your baby will need your attention, love and care 100% of the time.
9. Prepare yourself with support as looking after a baby in a body cast is exhausting.
10. Hold your baby close as many times as you can before the operation.

I can't wait for Annabelle's cast to come off so that i can hold her close again.
Now it's 7 weeks of waiting, hoping and praying that her hip forms correctly. fingers crossed.

sara

[minimatron]

Wow sara, thats really great of you to pop that stuff down for people to read. Good luck for the next 7 weeks.

wysiwyg...thats great news. I remember when we could take olivias harness off and she would be frog legged with out it on. After she had it completely off it took about a month for her to keep her legs straight. Its hard to readjust to a baby without a harness. I think for me it was the fact that when Olivia got the harness off, she had to learn how to sleep with the freedom of her cot...she was able to roll and get stuck and move out of her covers. It took months for her to adjust to that...lots of sleepless nights!

Well its been so long since all that has happened, although it only feels like yesterday. Olivia is now a very active 2.5 year old and you wouldnt know she had anything wrong with her hips

Take care

[nicoli]

Hi everyone

wysiwyg - good to hear that DD is now improving so much after wearing the dennis brown brace. It is so wonderful to see their little bodies again after having a harness/brace/cast on for so long isn't it? I'm sure that her legs will come in eventually although I must say that even to this day Scarlett is very flexible and often spreads her legs out to the sides when lying on the floor.

Sara - it's great to hear that you were so prepared for what was going to happen. I think the more ready you are the easier it is for you to be there for your daughter. I hope the next 7 weeks go by quickly.

About our little man - we had his ultrasound last week but only saw the paed today. The ultrasound was a nightmare. He pretty much screamed for half an hour while having it done. The woman doing it was a real cow. She was nasty to me from the moment I got in there and decided she hated me when I rejected her suggestion of putting sugar syrup on Xavier's dummy to calm him down. Oh well back to the results - the paed said that he has stage 1 (borderline) DDH but thinks that he will grow out of it. He has ordered another ultrasound in 6 weeks to check his progress so I'll keep my fingers crossed. I didn't ask the sonographer what the ultrasound looked like while she was doing it (because she was so nasty) but I saw the percentages were between 50 - 60% when she was capturing the images. I remember Scarlett's good hip was about that, but her bad hip was 17% so I thought his results were pretty good.

I hope everyone else and their bubs are doing well.

Nicole