Hip Diplaysia Support Group #3

[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

[Rachelle]

HI Ladies!

Karen-Thank you for sharing your story. It is so helpful to hear another person's experience as it gives us all strength to walk through all of this. And you are so right, our babies don't have a "long term disability", thank God! I am glad to hear that Summer is over the half way point and it sounds like you have adjusted fairly well so I know in time, we will too.

So, here's the latest. Taylor had her surgery yesterday morning. The hardest part emotionally was giving her to the anesthesiologist's so they could bring her to the OR. Well, that was the hardest part yesterday anyway. The past 24 hours have been almost unbearable. I kept telling the resident on call last night that Taylor needed something to help her relax like a muscle relaxer and he kept saying No and continued to give her narcotics and benadryl which was literally making her crazy. Up until a few hours ago, she had only slept 3 hours total in the past 24 hours. The resident finally agreed to give her a relaxer and now she has slept for over 2 hours. I couldn't help but cry this morning. I've never felt so heart broken and helpless. As a mother, all you want to do is help your children, and I realized that I can't do anything to "fix" this for my baby. Very heartbreaking! But, I know she will adapt in time.

As far as her surgery, it went well. She will be in the spica cast for 3 full months and will have to have 2 cast changes under general anesthesia during that time. After the cast comes off, she will be in the brace for 1 year (the first three months of that, she will wear it 24/7 except for bathing and diapering).

Anyway, I will keep you all posted!

Rachelle and Taylor

[KylieCL]

Hey Rachelle,

Its good to hear from you. Im glad that Taylors operation went well. I just want to remind you that we are all here to support you over the next year or so as i am sure there will be plently of challenges ahead! But regardless im sure that all will work out fine!

It's so sad to hear that Taylor isnt coping to well after her operation. She will get there remember that! she can only get better and now after the resident is on side and doing what mother knows best you may beable to relax a little and get your head around a bit of what been happening.

All the best over the coming weeks and please keep us posted!

[Rachelle]

Thanks Kylie!

Taylor is doing much better today. She was actually discharged last night from the hospital. She just wasn't doing well in an unfamiliar environment and the other baby that was in the room was crying off and on constantly. So, last night they sent us home with the pain meds and muscle relaxers and Taylor slept 12 hours although I got her up three times to change her diaper, positioning, and give her the medication. Now, she is sleeping again (her third two hour nap today). So, I am grateful that she is getting caught up on her sleep. She definitely needed it! She has been very frustrated and angry today and when she gets too overwhelmed that she can't get down and walk like normal, I think her brain shuts down and she just wants to sleep. I guess it's her body's way of healing itself and her way of dealing with it all. I know she will get better with time!

Thanks for all of your support ladies!!!

Rachelle and Taylor

P.S. How do you get a picture on the bottom of your messages?

[BubbaGirl]

Hi Kartier,

My bub is 6.5 months old and has been in the Spica for just over a month. She has been a great night sleeper since 2 months old and after being placed in the spica she does wake more often HOWEVER I don't think it is mainly due to this.

One night Summer woke 6 times crying her heart out and I was able to quickly settle her and she would go back to sleep. This happens on and off especially after I have put her down in the evening - she wakes about an hour later crying but then settles straight back to sleep. I wonder if she has muscle spasms after being asleep for a short period (although this does not happen during the day).

When they hit 6 months bubs go through developmental changes due to a whole range of factors like eating solids, growing teeth, reaching new milestones. My clinic nurse told me that Summer is probably getting frustrated because her body is telling her to do new things ie roll, crawl, sit up but her legs won't let her.

Your situation sounds far worse than mine (and I hope it has calmed a little since you sent your message) but I guess you just have to hope its a phase that will pass. To be crying constantly does indicate that something just aint right.

If it persists maybe try contacting your specialist/hospital care team to see if they have had experience with this. I don't think GPs really have the expertise in this area to identify a problem relating to the brace.

Hope that helps in some way.

Cheers, Karen

[Rachelle]

Hi Kartier,

My daughter is now 18 months old and wasn't in a cast or harness at 6 months, but right at about 6 months old she went from sleeping all the way through the night for 12 hours to waking up multiple times per night. Her pediatrician said that this was due to her development and teething, although I am sure your baby's harness isn't helping. My daughter had sleeping issues until she was 10 months old and then I just got to the point where I was so sleep deprived and couldn't handle getting up with her multiple times. I finally let her cry it out and stopped bringing her back to bed with me. I would go in to soothe her and it was the hardest 4 nights of my life and hers too probably, but at the end she learned how to put herself back to sleep and hasn't had any problems since. If you try this method, be sure to have a lot of support because it's almost impossible to not go pick up your baby when they're crying. This doesn't work for everyone and as long as your happy with the arrangement and don't mind this phase then just continue with what you're doing. She will grow out of it at some point! I hope this helps.

Rachelle

[Kartier]

Hi,
Thanks for your support and help, it has helped us out in our current situation. DD had a few bad days where she just wouldnt sleep at all no matter what we did to help her it wasnt what she wanted or needed. Since then it has settled down and she has been checked out by her specialist and a new harness was fitted yesterday. Although her specialist seems to think it was not the harness but her development (ie teeth). DD has been a little better in sleeping at night but we are still having a few problems putting her to bed,we will keep at it.
BubbaGirl: Thanks for your help. We ended up seeing her doctor the next day and she was o.k. Her specialist thought that it may have been her brace and fitted her to a new one. Since then her sleeping has been o.k. It is strange as she will sleep during the day on time and for 2 hours a go,but when it comes to putting her to bed a night she gets so upset. We end up trying to settle her for an hour then we take her for a drive or a walk. It seems to have helped lately. I am sure it is just a phase DD is going through.
Rachelle: I took your advice and let her cry it out for a little while, but she went on and on for at least an hour. So we gave up and took her for a drive. I know that this will not last I will keep at it and will have some postive news soon
Thanks everyone
Kartier

[Kartier]

Hi everyone-
Firstly- Just wanted to say thanks for everyones support with DD and her recient situation,she is doing great now and it still smiling which makes us laugh and smile to.
karalee, I understand how you are feeling as I felt the same when my DD was placed into the Pavlik harness at 4 months of age. I was so upset and thought that I had done something wrong with her that may have caused it. I realised quickly that it was a common condition and is treated quickly. It is getting past the blame factor that is the hardest but you are not to blame at all. The question about how to cuddle her? Believe me any form of cuddling is all she needs. Being in the position she is in you will find what fits you both and will still enjoy her. My DD was put in a Pavlik harness at 4 months then into a Rhino Harness thereafter. In both cases I still managed to breastfeed her. It maybe uncomfortable for you but not for her as she molds to your body and how you hold her. Be patient as she wants to be near you and you will eventually find the right fit. It is amazing just how well they cope with the harness on. Keep your chin up as we have been through this and it will get better I promise that. It has been 3-4 months for me and I am able to give advice to other mums in your situation. You are doing great just remember that.

Rachelle- Glad to see that Taylor is doing well. keep up the great work.

BubbaGirl- Thanks for your support, it was hard to hear that she had to be placed into the Rhino Cast. We were hoping that she would be out of it by Christmas but she will be in it for a little while longer. It was heartbreaking. But I know that as long as she is happy and smiling then that is all I need in life. She is happy at the moment and has now produced 2 teeth so she is still developing as usual. We are pleased as punch.

[karalee]

kartier, thank you so much for the kind words. im glad to know that cuddling and breastfeeding at least wont be painful for her. appointment with the ortho is on wednesday, so im sure i'll be poting something that night. i just hope its good news instead of bad.