Hip Diplaysia Support Group #3

[Shannon]

Finding out your baby may have Hip Dysplasia can be a stressful time for parents. The thought of putting your baby in a harness can be very upsetting. Please share your experiences past or present and help support others going through this tough time.

Developmental Hip Dysplasia affects approximately 1 in 600 girls and 1 in 3000 boys in Australia. It is a condition where the hip joint is dislocated or prone to dislocation, due to either the socket being too shallow or the ligaments being too slack allowing the ball of the joint to fall out of place. The left hip is 3 times more likely to be affected than the right, and bilateral hip dysplasia is not uncommon. There are a number of known causes of hip dysplasia including family history (1/3 of cases have a family history), congenital disorders (eg spina bifida or cerebral palsy), breech delivery or a multiple birth.

Signs that a baby may have Hip Dysplasia can be reduced joint mobility, a low clunking sound when the leg is rotated or an unusually large perineum. If only one hip is affected, some other signs can be that the skin creases of the buttocks don’t match or one knee may look higher than the other. Sometimes diagnosis doesn’t come until later (about 2 or 3 years old), and this is indicated by an unusual waddling gait, a limp, uneven hips or walking on tiptoes.

Approximately 95% of babies born with hip dysplasia can be successfully treated. Treatment for a newborn involves a Pavlik harness which holds the joint in place while the baby's skeleton grows and matures. Subsequent x-rays will track the hip joint's progress. The Pavlik harness is effective in over 85 per cent of cases. Most babies will require the harness for between six and 12 weeks and do not appear to be distressed by its use. Babies diagnosed over 6 months old may require a general anaesthetic to manipulate the hip back into position, and an operation may be required.

Most babies with successfully treated hip dysplasia have no further hip problems later in life, although they may be susceptible to arthritis.


Sourced from The Victorian Government Better Health Channel Website

[Shannon]

Previous thread HERE

[Rachelle]

Hi Melissa,

I am sorry to hear that your little one has to stay in her brace. I can't imagine yet how hard it must be. I will pray that God will give you strength to get through it all.

After reading everybody's stories, it makes me sad that all these babies have to go through this and make me angry that there isn't more awareness in pediatricians to catch it in the first few weeks so that our kids don't live months at a time not being able to develop normally. I know I still am in disbelief that my daughter is 18 months old and had gone all this time without her doctor noticing. Arghh! I've been doing good for a couple days and now I am back to crying. It's been almost a week since her visit with the surgeon and the scheduler's still haven't called me with a surgery date. I just want this all to be over with. Right now, I am just cherishing the moments I have with Taylor not in a body cast. I am letting her get as dirty as she wants and fitting in all the baths I have time for. I just feel so sad for her and I can't do anything to fix it and make it better for her! My heart breaks for all that she will have to go through just to walk normally. From what the surgeon said, it sounds like it will be a long road for her since it was caught so late. He said even after her cast comes off, she will be in a brace for at least a year. Apparently kids learn how to walk with the brace on, but from everything I've read, I don't think she will be too happy about having it on.

Sorry I am rambling, it's just been a long and emotionally exhausting week and all of you are the only ones who really understand all of the feelings.

Rachelle

[Kartier]

Hi Ladies,
Minimatron-
My thoughts are with you. It is not easy to hear that your DD has to be in the brace for another 8 weeks. That time will fly I promise.I was told by the area nurse-DD being only 2 weeks old and by a local doctor when DD was 3 months old not to worry as she would grow out of it?? One month later, after being concerned about it I went to see a specialist only to be told that she had a serious case of "clicky hips" and had to go into a brace asap. 24 hours later she was fitted and will now be in the harness for 4-8 months. I understand the frustration of having to strip her down, bath her and then place the harness back on. DD was upset for a month but has now settled down. You are not being selfish at wanting the best for your DD so dont beat yourself up as you are doing a wonderful job. Anyone that has to watch there DD go through this is entitled to vent and talk it out with those that have and continue to go through this. I vented last month about my DD and it was you and other members that helped me get though that first week. Hang in there Minimatron, we are all here to help.Big hugs.

Rachelle-
I understand where you are coming from, it is emotionally exhausting and draining to go through this. My thoughts are with you and your DD. We are all going through this and it is heartbreaking to watch. My DD is in the Pavlik Harness for 4-6 months at this stage, but she may need to be in it for 8-12 months. We were told that if it was picked up at her first visit then she would have been in it for a few months not 4-8 months.I have heard that kids in the brace will often crawl or move themselves with the brace on. Children seem to cope better than the parents at times.
Hang in there

Kartier

[minimatron]

Thanks girls its really good to get things in perspective. Thank you
Melissa

[Rachelle]

Thanks for the encouragement Kartier! I really do appreciate it. I have to ask if anyone filed an out of court settlement with their pediatricians? Because all of this was not caught 18 months ago, there is going to be the cost of the surgery (which was preventable), my time loss from my self-employed job, my daughter's dad's time loss off work, and at least a 6 month delay in my nursing school which means 6 months lost wages once I graduate. I loved her pediatrician. I just want her to learn from all of this. She feels horrible and knows that she messed up. I want to focus and getting my daughter through all of this but it's hard when you don't know how you will make the finances work out during this long road and after.

Melissa, I know you will pull through. Just take it one day at a time and let yourself feel the way you need to!

Rachelle

[KylieCL]

Hello Rachelle,

My name is Kylie and i have a gorgeous (nearly) 5 month old daughter Azaliah (Zali). She was diagnosed with hip dysplacia at birth but the doctors delayed putting a brace on her untill she was 4 and a half months old as they THOUGHT it was going to fix itself (which it obviously didnt). Although it is nothing in comparison to what you are going through i can completly understand those emotions- seeing my little girl being placed into the brace for the first time broke my heart but now two weeks on its almost like its been on there forever.

I really miss dressing her up cute and carrying her normally - i cant even take her shopping as she doesnt fit in the capsule of the trolly! Its such a pain in the bum but atleast she gets to take it off for exercise and a bath.

I am to very anxious about getting her brace off as the Orth. Surgeon we went to see in Perth told us that two months will be enough for her in it and i have got this big count down going on for us... i really hope he hasnt just got my hopes up - i really want her to be brace free for her first christmas!

I hope everyone is well and that your precious children are doing well in their respective braces/harnesses/casts.

Thinking of you all

[teepee2]

Hi ladies

Mel sorry to hear that your appointment didnt go as well as you had hoped. It must be devastating for you but I suppose its best to make sure things are 100% before getting rid of the harness. It would be a shame to have to go back to it once your DD got used to being free. Hope the next 8 weeks will be enough

Rachelle lots of hugs coming your way!!! You must be shattered to find out that your DD needs surgery. We're waiting to find out if our daughter needs a harness and thats distressing enough. I cant imagine how upset you must be right now but as the others have said the babies seem to adapt alot better than their parents do. I hope the pain and discomfort for your precious daughter is minimal and short lived. Best of wishes to you xx

Kylie hope Zali is adapting well. Thinking of you xx

I'm starting to get a little anxious about our next ultrasound. Mikayla seems to favour lying on her side and I cant imagine that would be too good for her hips. I try to move her onto her back once she's fallen asleep but she really doesnt like it and now that she's getting stronger she eventually moves back on to her side. I really hope that it hasnt made things worse.

Hope you and your bubs are all doing well.

Take care xx

[bizzib1975]

Hi All,
I just wanted to post to first vent my story and secondly seek some support and suggestions for what i am going through.
I'm 32 yr old new mum whom was born with CHD that wasn't detected until i was almost 5, many operations and years of hospital visits to finalling repair my right hip. I currently am in the processes of having another operation and my movement is very little now and am in pain daily making it hard to walk let alone carry by baby.
3 Months ago i gave birth to a beautiful girl Madilyn and she has since been diagnosed with the same thing but in both hips and as of friday is in a Dennis Brown Bar. Firstly i'm deversated that she is going through the same thing and for 3 days now my baby has done nothing by cry and eventually cry herself to sleep. I've been reading on the site and most people have said they babies have been fine with the brace so i don't understand why Madi is soooo upset. It's not only breaking my heart but breaking me full stop- I Don't know what to do!!!
I called the hospital and they say to "just give it time" but they aren't the ones trying to handle my princess. She's not sleeping and not eating properly either and as for the suggested more tummy time - i feel that i can't even get to the stage of having playtime.
Please if you have any suggestions i would be greatful.

[bridee]

Bizzib, I'm sorry don't really have any suggestions just wanted to say I'm thinking of you and hopefully it will get better. My daughter is in a pavlik harness so not sure if babies adapt better to it than the bar. Hopefully someone else here will have suggestions for you. Just remember it is much better your daughter go through this now than later and have the problems you had/have. It will be worth it in the long run.

[KylieCL]

Hello Bizzib,

I have to say that my daughter was shoking for atleast the first week with brace on (she is in the 'correctio'). She wouldnt sleep and we had a hard time getting her to feed as it was really difficult for her to get comfy- it was just like having a new born all over again.

Things will get better i can promise you that, babies adapt to things really well!

Thankfully Zali can have her brace off for upto 2 hrs a day (i rarely give her that much time though). during this time i put her on her tummy and massage her hips to help with any cramping from staying in the same position all day and i also massage her back and shoulders... at the start i also gave her a dose of nurophen but she doesnt need that any more. This really seems to calm her down and help her settle into bed.

Now after two and a half weeks with the brace on Zali slept her first full night in her entire life last night!

[Rachelle]

Hi Ladies,

I just wanted to say thank you for sharing all of your stories. It has really helped me this past week.

Susan-Thanks for the website. They were so helpful and I feel better prepared for my daughter's surgery.

Kylie- That's great that your daughter is sleeping better! I am sure you feel better too since you are sleeping better hopefully.

Bizzib- My prayers are with you. This must be hard and since I am on the pre-surgery/spica cast side of this all, I don't have any advice. But, from what I've read from my own research, just try to keep her routine as normal as possible and have structured time throughout the day with lot of activities and walks to help keep her mind off the fact that she can't move normally. I hope that helps and pray it gets better for you and your little princess!

Teepee2- Thanks for the encouragement. I am sure that Taylor will adapt better than me. I just know we have a very long road ahead of us. I hope all goes well with Mikayla's ultrasound!

So to keep everyone up to date, we finally have a date for Taylor's surgery (sooner than I wanted). Taylor's surgery is scheduled for next Thursday morning (October 11th). I have no clue how to prepare and just wish I had more time to get organized. Does anyone know how to deal with an 18 month old in a spica cast. It just seems as though it may be difficult since she is used to walking and climbing. She is so independent and I'm concerned she won't adapt to being immobile.

Anyway, well wishes to all of you!

Love, Rachelle

[KylieCL]

Hello Rachelle.

How are you feeling this week?

I just wanted to let you know i am thinking of you in the lead up to Taylors surgury! I hope everything goes well and Taylor adapts well to her cast- i'm sure she will with a great mummy to keep her entertained!

And hello everyone else!

Zali is doing really well! She has had a cold but apart from that she seems to be ok. Sad thing is she cries now when i put her brace back on after her bath its like shes saying "no mummy!" Aww it breaks my heart!

Thinking of you all

[Rachelle]

Hi Kylie,

I am feeling better this week about the upcoming surgery, although Taylor and I have both had cold and the stomach flu this week. We are finally on the mend and I think she will be 100% better by the time of her surgery on Thursday. We are going in Wednesday for a pre-operative visit.

I hope you and Zali are well too!

Rachelle

[minimatron]

Hey Rachelle,
Good luck with Taylors surgery on Thursday, you will be in my thoughts.
Kylie, I know what you mean about the cries when you put the brace back on. Its a nightly occurance for us. I would have to say that Olivia, although only six months old, is such a patient kid. God bless her. I am so lucky. We start swimming lessons this morning, which I am so excited about. I am hoping she will take to it easily. I was swimming every morning with her up until I was 34 weeks pregnant, so I am probably the most excited...havent been in the water much since she was born.
Anyway, better go, I can hear her pushing out her morning poo!!!!!
Take care all
Love Melissa

[KylieCL]

Hello Melissa!

Yay! we are starting swimming lessons next week i am so exctied too and have bought Zali a few pairs of bathers (and yet i am wearing my old ones, go figure) i figured it was nice gentle exercise for her hips and allows her out of that stinky brace!

Have fun!

[Kartier]

Hi Rachelle,
Just wanted to wish you and Taylor well for her surgery on Thursday. My thoughts are with you both. Keep us posted on how she is doing. Many hugs

[BubbaGirl]

Hi everyone,

Have been reading your messages over the past week and wanted to come on line and share my experience with DDH. My daughter Summer was diagnosed just prior to 6 months dispite an ultrasound at 7 weeks confirming no hip issues. Due to someone's incompetence she now has to endure 3 months in the spica and 3-6 months in the DB brace.

Its 4 weeks tomorrow since the op and we are both doing great (most of the time). After the initial shock, many tears and fears of being able to cope, extreme anger at the missed diagnosis and worries of how to care for Summer, I can honestly say that we are getting on with life as much as possible as a normal 6 1/2 month old child and mum.

At first when we saw the specialist, I honestly could not get my head around the problem and couldn't stop thinking about all the things that were going to change. How would I b/feed her? Comfort her? Know if she got a skin irritation? She loves kicking her legs and having a bath. All the normal, everyday things which had become our routine and her joys were being taken away from her because of someones incompetence.

Once we got through the surgery and a week or so into it - I finally realised that this was not a disability nor a long-term issue (hopefully). We found an OK feeding position, I comfort her in a new way, her sponge baths make her feel refreshed and even though she still tries to roll over in the spica, she really is the happiest little girl. I also found a way to keep her as clean as possible and have only had 2 little leaks in the whole 4 weeks. (The one thing I was worried the most about).

In 2 weeks we go back to Westmead for the cast to be changed. Unfortunatley Summer goes under again and that will be quite distressing. I know though that the last 6 weeks will go quickly and before long she'll be able to kick her legs in the water for the hr a day she can have the brace off.

A nice quote from a friend keeps be going at times - the joy of family life far outways the pain but without the pain there is no measure of the joy. Summer and I share very special moments each day and that's when I realise how lucky I am to have her and that down the track this will all be sorted and she will develop normally.

Thanks for setting this up Shannon cause I think there is a real need for a support group when DDH is so common. Makes me want to get on the bandwagon and make sure no other mums have to endure what we have when these things aren't picked up early enough (will certainly be doing something).

I'm keen to find out more about a few things:
- how much movement in the brace (tummy and thigh straps not the bar)
- does anyone know much about how quickly bubs pick up with their physical development after they come out of the brace ie. legs come back in, rolling, crawling etc. I know this will vary from bub to bub.

A special good luck to Rochelle for tomorrow. All will be fine and stay strong as you have a little girl that needs you. Just give yourself a chance to get into a routine, see how it affects taylor and try to get on with life as normal as possible. I know this is harder when your bub is older but she needs to still be treated as normal as possible. Hope that doesn't sound harsh.

Hope to talk more with you all over the coming days.

Karen and Summer Rose