Hip Dysplasia/Spica Cast/Pavlik Harness

[3girlsfun]

There is a strong possibility my 6 month old may end up in a Pavlik Harness or a Spica Cast. Has anyone here ever dealt with Disney with one of these?

We have already told our ODD that we are going to Disney, so I don't want to go back on the trip. I figure we can deal with things while we are at Disney....just curious how much it impacted things while you were at Disney.

Thank you for your help! It is so much appreciated!

 

[SueM in MN]

Welcome to the disABILITIES Board.

Some of the issues you will need to work thru that I can think of:
- What position will he need to be in? Lying on back or can he be propped to sitting?
- How are you getting to WDW? Will he be able to be in a car seat or airline seat? (When my youngest DD had a hip spica cast for 6 weeks after surgery, she was older and could sit in a booster seat. If she could not have, her hips would have been spread too wide to fit in a car seat.
- Do you have anything he will be comfortable riding in (stroller or buggy)?
You will be able to get a Guest Assistance Card and/or sticker that would allow him to use a stroller as a wheelchair. Strollers are not normally allowed in most lines; that would allow you to bring the stroller into line with you and have it treated the same as a wheelchair. You can find more information in post #6 of the disABILITIES FAQs thread (see link in my signature).
- Depending on just how the cast or harness fits, you may not be able to secure a diaper on him. It might be more just sort of resting on the diaper area. For changing diapers, most restrooms have nice changing tables or you can go to the Baby Care Center in any park. You can also go to First Aid (which is next to Baby Care in the parks); if he needs to lie flat for a while, they have cots where you could lie him down (they don't have bars or anything, just flat cots).
- Last thing I can think of right now would be heat. That sort of cast could get rather hot.
-

 

[3girlsfun]

I didn't even think about the car seat. How do you take them anywhere if they don't fit in a car seat? Hmmm......

I wonder if I would need a certain kind of stroller to fit the cast/brace?

I may not be buying my plane fair now just in case we can't get the baby in a car seat. We will have to drive 2 hours to get to the airport we are flying from.

 

[SueM in MN]

I didn't even think about the car seat. How do you take them anywhere if they don't fit in a car seat? Hmmm......

I wonder if I would need a certain kind of stroller to fit the cast/brace?

I may not be buying my plane fair now just in case we can't get the baby in a car seat. We will have to drive 2 hours to get to the airport we are flying from.

You may need something other than that even - it kind of depends on how large your child is.
My DD was 5 or 6 years old when she had a cast. In the hospital, they had a sort of cart thing, where she could be propped an positioned with pillows.
Once she got home, she had her own personal wheelchair, which we kind of retrofitted with a sort of wedge shaped piece of plywood under the seat to provide support for her cast.

We were dealing with a very small 5-6 year old, but I was surprised how heavy she was with the cast on. A 6 month old, would obviously be easier to move around, but you would still have to think about how you would get on and off rides with him and whether she would be able to sit on your lap for rides.

NOTE: I just noticed that your child is a DD, so I apologize for the earlier references to "he"

 

[gamomof2]

how far ahead of the trip is the spica being put on? I think you should gage your trip on how your homelife with her is going. I work in an OR and we put spicas on alot. We did a 9 month old last week. That child isn't doing much for the next several months. You'll be amazed how heavy the cast is and if it is a spica there is so little room for movement, especially if your ortho puts a dowel rod between the legs. Really just wait and see how the cast comes out and then make the decision. Is she getting it at Egleston/Scottish Rite?

 

[3girlsfun]

The backdrop on the baby is that 2 months ago the pedi. sent our DD to have an ultra sound completed, and the pedi. said he "thought he saw something" and the radiologist insisted that he was not seeing "anything." So, now, fast forward to her 6 month appt. this week, the pedi. is still hearing the clicking in her hip, and her movement is not good, and she is not rolling over yet. So, he is even more concerned now. So, he is skipping the ultrasound route, and is sending her straight to the ortho. I should know next week when the ortho. appt. is, and then it will go from there. What is the time line I should expect once we see the ortho.? How soon would she be put in the brace/cast? The pedi. just told me to be prepared that he feels this is the direction it is definitely going in. I have no clue if the Children's hospital in Chattanooga, TN would be prepared to do something of this sort, or if we will go out of town. If we do go out of town, we would go to Egleston/Scottish Rite.

I will definitely not be buying any airfare at this point. If we do the trip, and we take her with us, my grandmother is going to babysit during naps and such, so she would just end up staying at the resort with my grandmother more. Although, we may end up just pushing the trip back. I don't want her to be miserable!

Thank you so much for the information. It is stressful enough just thinking about this in the normal day to day life, but, thinking of traveling with this issue, seems a bit overwhelming in a sense.

 

[WishMom09]

My Ds was born with bilateral hip dysplasia and wore a pavlik harness til he was at least 9 months (maybe longer??)....and he was a big boy!! He fit in a regular car seat just fine!
Best of luck to you!

 

[zippy2]

My son was in the harness and cast several times. (He's 18 now). When he was a baby we were about to rent a special car seat. I'm sorry I don't remember where but the insurance paid for it. For diapers we cut them to stuff inside the cast and put a bigger diaper over it. For what it's worth he had no trouble with it, never seemed to bother him.

 

[gamomof2]

Your location said Georgia so I assumed you were closer to Atlanta than Tennessee. The spica cast is put on in surgery so that would just require a day visit. We do not do the harness here. If the ortho thinks that she needs it then it would just be a matter of getting on their schedule. They may order additional testing besides an xray but that might also require sedation. All of this can take time to schedule and depending on when your Disney trip is she may not even be in the device yet.

 

[mrspopeye]

My oldest daughter (who is 15 now) was born with congenital hip dysplasia. She had a Pavlik harness at 4 months and 2 spica casts, one at 6 months and another at 12 months. Neither of these worked for my daughter. I undertand that the sooner you discover this, the easier it is to treat. Her hips did not click on her routine baby exams. When she became hospitalized at Vanderbilt at 4 months old with RSV, she had a medical student assgined to her who found that the hips clicked on exam at that time, probably because she was weak and sick. After she recovered, her hips did not click on exam again. An ultrasound showed the hip dysplasia. She had corrective surgery at age 2 1/2 in which bone was taken from the hip and molded into the right place, she was in a one legged spica cast for 6 weeks after that. I very much understand what you are experiencing, and I am a registered nurse as well.

We used her regular baby carrier that doubled as a car seat while she was in the spica cast. We cut opening in the plastic so her legs could hang off the sides. She also sat on in one of those bouncers that allowed her legs to hang off the sides. We found a bean bag to be helpful also. She will not fit in any kind of high chair or a shopping cart while she has the cast on. Babies adapt so easily. My daughter actually learned to pull to stand with the cast on at 12 months. She was trying to do that some before the cast and then all of sudden the cast was on and she had to learn all over again. The first cast went to her ankles, the 2nd just to her knees, 3rd cast down one leg only all the way to her ankle.

I highly recommend the pediatric orthopedist that treated her, Dr. Mark Christofesen at Tennessee Orthopedic Alliance near Baptist Hospital in Nashville, if you were willing to drive that far. He is very experienced and still practices currently. We saw him a few months ago because her hip was popping but it was unrelated to the surgery and he was pleased with how well she has done 12 years after the surgery.

Also, they did an ultrasound on my other daughter as well, who does not have it. Be sure they do ultrasounds on your other children, even if their hips do not click. My daughter who had it never had them click on a routine exam, only while in the hospital and sick.

It would not be a big deal to take her in a Pavlik harness, but I would not really want to go to Disney with a spica cast. It is big, bulky and heavy. Her legs will be at nearly 90 degree angles to her body.

Best of luck to you- one day this will all be a distant memory.

 

[SueM in MN]

Babies adapt so easily. My daughter actually learned to pull to stand with the cast on at 12 months. She was trying to do that some before the cast and then all of sudden the cast was on and she had to learn all over again. The first cast went to her ankles, the 2nd just to her knees, 3rd cast down one leg only all the way to her ankle.
Best of luck to you- one day this will all be a distant memory.

That part brought back some memories for me.
My youngest DD has cerebral palsy and her cast was the result of surgery for hip muscle releases and ankle tendon transfers.

She was first in a hip spica cast with a bar between her legs to separate them and hold the hips in position. She used the bar to help pull herself to sitting!

She got her cast cut down several times before we were done. The worst to deal with was when her hips were free, the bar was off, but she still had the casts to well above her knees. That was hard.