Need Words of Wisdom for Hip Dysplasia

A friend of mine just went through this with her daughter. She lives a state away from me so my only updates were in photos, but her daughter did well. She is up and running now, a few weeks after getting her cast off. I think she was in a cast for most of the summer... it was hard on her, but kids adjust quickly, and she is fast now :)

J.

We found out my DD had it at birth because it was that apparent. She had bilateral hip dysplagia. She had no hip sockets whats so ever. The first ultrasound on her left hip measured negative over the months we saw her sockets go from being straight to forming into a C shape. Her right was slightly better than her left but still no point of calling it a socket. Her ortho doc at Childrens here in Seattle said it was the most severe case he had seen in a very very long time. We started at 3 weeks of age with the Palvik Harness and kept that on until 3 months. At three months we graduated to a Rhino brace. We saw her ortho doc every three weeks until she was 3 months then she was doing really well he said see you in a month. She saw him monthly until 5.5months after we were told she didn't need her brace anymore he saw her at 8 months.
After two different braces of being worn 24hours a day for 3 months then 2.5 months of only 12 hours a day did she finally got released from having to wear the brace. The doc said at her first appointment he fully expected her to need bilateral hip surgery if not more than once. She exceeded all his epectations and fully recovered with no surgical interventions. He actually is trying to publish her story with this type of bracing.
For her thankfully we started young with the braces. I think you might have a more difficult time of them than I did since she knew no other way of life. In fact at three weeks when we got her first brace on she slept for like 16 hours straight. I thought something was wrong. It was that she was just comfortable for once.
She is now 10.5 months old and trying to crawl and prefers to walk with my husbands or my help. She didn't roll until about a month ago and sat up early 5 months unassisted due to I think the use of the brace made her trunk muscles stronger than a normal child. I watched her gown not expecting her to walk until much later than most babies and not to even crawl until 1 year just do to her not being able to move her legs until 5.5 months. .
. Throughout all this was very trying as a new parent. I broke down one day and just thought what did I do to my daughter. I realized that God was just putting me through a test. This little girl needed parents that were going to do their best with her to help her get better. I am not a religious person either. If you need anyone to talk to please message me. I had no one while going through this beside my hubby and it wasn't easy. So please make sure you have someone to talk to outside your SO you will need it probably at some point. Good luck.
I just read your what happened and most likely depending on the severity your little one will actually more comfortable. Yes she will walk and crawl later but whats more important those things are being healthier later on.
Keep smiling and kids are more resilient than you or I would be. It becomes life since they don't and can't remember anything before this. She will protest probably but learn to live quickly.

Hi R.,

I'm not a mother of a daughter with hip dysplasia... I WAS the daughter :)

I wore a brace almost constantly from about your daughter's age until a year old. I had a funny crawl which was really just me dragging the brace around, but it didn't stop me.

I had some gross motor issues in my early childhood, but my mom put me into dance at 3 and I was back on track. I actually became a very good dancer and studied classical ballet through my teen years (then I got more interested in having a normal social life... but that has nothing to do with hip dysplasia)

For years my hip "clicked" if I moved certain ways or did the butterfly stretch in gym class... but that went a way bit by bit and by the time I finished high school it really didn't do it anymore.

As a mom, I know how hard it is to find that something about your child is not as expected, but as someone on the other side of this I also know that your daughter will be fine :)

HTH
T.

Hi R.,

While I don't have any experience with your daughter's problems, I just wanted to let you know that you and your daughter will be in my thoughts and prayers for all to go well with her treatment. I'm sorry if other people have given you reason to feel that you would get a lecture from other moms. Everyone deals with their own issues in different ways, and your concerns are valid.

Please know that most people will only hope for the best for you, including me. Give your daughter a big hug for me, and I hope the next few months will go smoothly for you.

Take care,
L.

You are SO LUCKY that the way they treat this these days is so easy and effortless! And so is your daughter.

Forty-four years ago, I was diagnosed with 100% total congenital hip dysplasia. I had no ball, just the socket; the ball had to be naturally made (that is, my body had to be put into a position so that it could form the ball naturally on its own).

I spent a few months at Children's Hospital in Minneapolis in traction. Then I was put into a full body cast from the nipples down, with an opening for front/back body wastes. Those casts had to be "sawed" off me every couple of months and a new one put on while my little body grew. At 1.5 years old, I was out of the casts and into a leg spreader brace. Finally got to toilet train, learn to walk and run, and get around like other little kids. Then at the age of 2 years old, my body was growing too fast for my hip sockets to keep up and I had to go BACK into a full body cast. I hated it! I had learned how to walk and go to the bathroom on a toilet and I didn't want to be a baby! My parents didn't get any sleep for a week while I screamed my anger. But after that round of casts (about 6 months) and then the leg spreader brace again for a number of months, I can walk nowadays with no ill effects.

If I hadn't been born in 1968--when they first knew how to help babies born with this affliction--I would be wheelchair bound today and unable to walk. I thank my parents for going through the agony and the heartache and the love of letting the orthopedic specialist do what he needed to do, because for me, it was considered an "experimental procedure" back then.

I was so surprised and so very, very happy to hear what is done for babies born with hip dysplasia today and how much easier it is on both the baby and the parents. It makes me very happy to know that the treatment has progressed to the point where it's a very easy treatment that is 100% effective.

You'll get through this point in your daughter's life and when you look back, it will all be just a hazy memory. But you'll have a daughter who can walk and run and skip and dance--and that's the most important thing.

Hang in there. It won't be that long before you're done with this phase in her life.

My friends had a breech daughter and she had hip dysplasia too. She also started in the harness 23 hours/day at about 3 months - there was a short learning curve for baby AND for mom/dad (like how to change a messy iaper w/o removing the harness), but she adjusted to it far more quickly than they did. I don't remember how long she wore it - 3 months? 4 months? I think toward the end she was just wearing it at night... though I might be remembering that incorrectly...

At any rate, she's 2 now, and races circles around all of us. :)

My DD was diagnosed with mild DDH when she was 2.5 weeks old. She wore a fixed hip abduction brace for 2 months 12 hours a day(while she slept) from 4to6 months old. It completely corrected the problem but led to others. Her hip muscles were so tight she ended up never crawling and started walking on her own at 20 months with the help pf a physical therapist. As far as the brace goes your daughter will get used to it as it will become part of her routine....she will be ok and you will too! Now my daughter is all over the place :) I would suggest if you notice a delay in her gross motor skills as of one year old mention it to your ped and get therapy if needed so her walking is not delayed.. Good luck!

I totally understand what you are going through. I have 19 month old twins and when we took them in to be checked, we learned Baby B had a displastic hip and would need the same. While there are MUCH worse things to have to deal with, I felt the same as you and cried at office. Actually, the dr. came in, told us the prognosis/treatment, walked out and I looked at my husband and started crying then asked what the hell she was talking about. They had to come BACK in and explain again because I was so taken aback at something being wrong (for some reason it didn't cross my mind it could happen!) that I didn't hear a word dr. said.
That being said, she is FINE now. Great actually. She got used to the harness very quickly and had to wear it for 3 months all day and night. Then she wore it for maybe a month and a half just at night time. I really think it bothered us more because changing diapers etc was such a pain! But truly, she seemed ok with it most of the time however she was younger than yours so to be honest, you may struggle a bit more at first or for a bit longer.
Try to buy some shirts or onsies with a collar because that part I think is most annoying for them. You can tuck the shoulder part in there and it won't rub.
But again, she's fine now. We had some issues with flat head for a while and it made me SO MAD. I was like, I CAN'T WIN! She has to have harness for hip but that means she's on her back all the time and now her head is flat! Screw you guys!!!! LOL.
That got better as well. I don't really think she was delayed much in crawling or walking. She was a few months behind her twin but still well within normal range for those milestones. (walking at 15 mo-i don't remember crawling:) When the harness comes off, there is definitely some weaknesses that you can help them work on - like I think mine's neck and shoulders were very weak so crawling was more difficult at first because she couldn't hold her head up for long periods.....but they are so resilient and like I said, the whole experience seemed to bother us way more than it did her!
Best of luck.....truly, it will be OK!!!!! Just keep remembering it is better to do now than have to address later when they really want to be running and jumping. I know its hard but take pictures and when she's a teenager and being annoying, we can bust out pictures of them in their "leiderhosen" to show their boyfriends. :)
Let me know if I can help at all.
R.