My baby in a full body cast!

[mamabike]

My 12 month old ds has been diagnosed with hip dysplasia. (Thi is usually diagnosed much sooner but it was missed ) He may have to have surgery and traction. He will definitely have to spend at least 3 months in a hip spica, which is a cast from chest to ankle. I cannot believe I have to put my baby through this. We have about 3 weeks left before it all starts to happen. I haven't had a big cry yet (just found out yesterday) but I feel like I need to. We have worked so hard to keep my spirited, sensitive child from CIO and now this. He's already had a rough go of things with a premature C-section birth, reflux, lots of food allergies, months of thrush... We're a loving, bonded nursing couple.

My biggest concerns are: how will I keep our bond strong? How will I help him understand that I can't take the cast off? That I can't make the pain go away? That he can't crawl, or go swimming, or take a bath, or go on the swings for 3 months...but that I still love him very very much. Nursing and co-sleeping will be awkward but possible I think. I'm not sure about slinging (cast will make him very heavy and I have a "bad hip" too). I feel terrible that he is going to CIO.

[mamaduck]

I'm so sorry!!!

I'm not understanding why he'll need to CIO though?

He'll be okay -- he has such a loving mother to be with him through this. He doesn't need to understand in order to be able to trust you -- and I'm sure he does trust you.

My baby sister was in leg casts for 3 months as a baby. I know its not the same thing. But it might be comforting to know that she adjusted very quickly and was very tolerant/accepting of the casts.

Sending you and baby my prayers and good wishes!

[USAmma]

This may not be very helpful, but I've heard that many doctors will recommend using double cloth diapers to help correct mild hip dysplasia. Is there any way they can just put a device on instead of a full cast? A boy at school had a device that wrapped around both upper thighs with a bar between his legs. And yes, get a second opinion before you do surgery.

Good luck. I'm so sorry you have to go through this. I'm sure if he's that spirited and strong-willed he'll figure out a way to get himself around despite the cast. My brother was handicapped with one arm missing and couldn't crawl. The state made him a simple skateboard type device with swivel wheels on it and he was able to get himself all over the place on that thing.
Maybe you could make one at home.

Darshani.

[IslandMamma]

I agree with others have said about that definite second opinion. Also, look into a Chiropractor and Rolfing... they may really be able to help. They've helped me, certainly.

I had moderate hip dysplasia as a child, and no corrective action was taken then. I was a competitive athlete through HS, and at the time, started having lots of problems. YEARS of physical therapy, a few surgeries, and lots and lots of alternative treatments (Chiro, Rolfing, accupuncture, massage..) have made the condition liveable. (Until childbirth, LOL). I live in near constant pain with my hips and knees, although it's very maneageable at this point. I still am more active than most people-- I ski, climb, bike-- just can't run anymore.

It seems like an awful ordeal for your child to go through now, but it may save a lot of pain and drawn out therapies later on. I'm suprised they haven't come up with an alternative to the full cast by now-- that was the treatment 28 years ago! Ugh. Second opinion, alternatives.....

The joke with me always used to be that I should see a veterinarian, they are more used to dealing with displaysia!

[mamabike]

Thank you for all of your ideas and support. Perhaps CIO is the wrong term. Of course I won't let him cry alone...we'll rock, cuddle, nurse. So, that's not really CIO - just .

My ds has uneven fat rolls, he limps, he is reluctant to put all of his weight on his right leg, and he holds his right leg turned out to the side. He was a "frank breech" presentation babe with torticollis. Both of these are strong risk factors for hip dysplasia. Also, I had hip dysplasia and had to wear a brace for 2 years as an infant. I have yet to hear how severe his case is. We have a specialist appointment in 2 weeks. For the next 3 weeks we are supposed to keep him from pulling up to stand and walking:

CK's mama: I checked out your thread. We went to a chiro about ds tummy problems about 6 weeks ago. She didn't spot anything asymmetrical/unusual about his hips or back. I might need to do some hunting for a new peds chiro. I'm hoping that because the dysplasia was missed by so many medical people, perhaps it is quite mild.

Double diapering is a great option for wee babes but it isn't enough for older babies whose bones are much more formed. I thiink I'm so freaked out by this because I know the realities of 3 months in a hip spica. I used to work in a children's hospital and looked after several kids in hip spicas. At least I know and trust our peds ortho already through my work. I've been doing medline searches too so I'll be sure to know all of the latest options. Because ds is on the verge of walking, he has to be treated pronto. Hip dysplasia prognosis is not nearly as good if treatment is started after walking.

Ds seems "out of sorts" today. I think he senses my distress. I should probably have that long cry soon. Thanks again,
Leigh Anne

[Piglet68]

Oh Leigh Anne, I'm so sorry to hear this!!

It is going to be hard, but you are lucky that you've had this time to develop a strong bond of trust between you and DS. I'm sure that with lots of holding and rocking in your lap, and of course those precious "nursies", that you two will make it through this ordeal together.

I'll be keeping you and DS in my thoughts. Please keep us updated on how it goes!

[Lyra]

Just want to send hugs to you and ds, Leigh Anne!!

The next while will be very challenging but you will find ways to cope!

ds is now 9 1/2 mos. He was born with severe club feet and has been in and out of full leg casts (from toes to top of thighs) since he was 24 hrs old. Club feet can usually be corrected by a series of castings but as luck would have it ds is at the 'very severe' end of the spectrum . About 6 wks ago he had surgery. He's still in casts and will be for probably another month. After that it's leg braces for a year or two. Then probably surgery again, etc, etc.

His club feet were diagnosed during my 18 wk ultrasound and I remembered feeling really overwhelmed for a while, wondering how I was just going to do the normal things with him if he was in casts. Worrying that he would be miserable. But he's amazed us with what he's learned to do . One nurse told me that babies are born to move and that there just ain't no way of stoppin' 'em. Ds crawled at 6 mos and now scoots around the house like lightning. He's even beginning to pull himself up on things even though he can't actually stand on the casts. Now that the discomfort resulting from surgery has subsided he seems to pretty much be back to normal.

Ds also loves water and while he can't take a bath or shower we do let him splash about in the sink. I also worried that I wouldn't be able to carry ds in sling but it's been fine. He is heavier but that just means that we can't go for such long walks. Even if you can only carry ds long enough to soothe him when he's at his unhappiest then that will help. Take the stroller and the sling out for your walks. We still co-sleep--just watch out for casts kicking you--ouch!

It's great that as a children's nurse you have knowledge of the procedure. One of the most frustrating things for me has been medical professionals underestimating the degree of pain ds would experience (I don't know if they were trying to 'protect' me from worrying or if they really didn't believe that he could be that uncomfortable). Life after the operation was hellish for about 1 1/2 wks and then started to get better. (Some of our problem was that ds would fight falling asleep even if given morphine and was also teething.) If your ds does require surgery then you really need to have people there to support you both at the hospital and at home. Even if ds will only accept comfort from you then at least they can prepare you food and keep your house from falling down around your ears!

And I hear you about not wanting to put your son through more discomfort! Ds has already experienced too much pain but I just keep trying to tell myself that it's for the best. I'm there with him either holding him or touching him and talking to him through every procedure. But yeah, it's still hard. Your bond will stay strong! Ds only started to experience separation anxiety after the trauma of the surgery. I think he's even more strongly bonded to dh and I as he has needed lots of cuddling and comfort.

I know our situations aren't exactly the same and I'm afraid I don't know too much specifically about hip dysplasia but I just wanted to give you a sense that things are do-able. It will take him some time to adjust to the cast and he's probably going to be really frustrated. Try to keep him as busy as possible and get out of the house as much as you can (Start planning now--LOL!)

Good luck!!!!!!!!!!

[mamabike]

Thanks so much for your inspiring message Lyra. You and your family show so much spirit and optimism. We are starting to plan....my Mom can come over after her work and help in the evening, dh is trying to get a reduced workload, for XMas my family is signing us up for a bunch of different baby music classes. I agree that getting out of the house is going to be key for everyone's sanity. Dh is building my son a "scooter board" (like a skateboard) that he will lie on his tummy on and hopefully learn to propel himself a little.
Thanks again,
Leigh Anne

[Marsupialmom]

Crying only hurts if it is alone.

He has you it won't hurt him much. There are children who go through worse than you two and the kids and parents are fine. Take a good look at what all goes on in a children's hospital.

Tragidies can bring you together also. He will see that even though you can not "cure" everything you are still there to be through it with him.

Nurse him, cuddle him, love him! You two will be fine.

[mamabike]

CK'sMama you're right....this isn't cancer or paralysis (I have to learn how to "quote"). Thanks for reminding me of the big picture. Thanks again for the support Mama's. I'm starting to feel "fortified" rather than afraid.

[Len]

Hi Mamabike!
I'm in Vancouver, though I don't think we've met. I just wanted to tell you that I'm here if you need something –in real life. DS goes to preschool in NVan so we spend some time there every week.
Also, our chiropractor is really really good; I'm not sure if she's a pediatric chiro per se, but she has been seeing ds since he was a few weeks old (no particular problem, but adjustments after a difficult birth) I can ask her about this if you want.
Big hugs to you , you sound like a very caring mom.

[Greaseball]

My dd was in a cast when she was 20 months. Not a body cast, so maybe it's not the same feeling. But she didn't mind it at all. She sat still while they wrapped her leg (she fractured her ankle, but the cast went from upper thigh to toe) and after that seemed not to notice it. She didn't mind not being able to walk. A week later she was able to crawl and that was fine with her. Then she started walking with it on and again never seemed to notice it. She wasn't scared when they cut it off.

The doctor said that a lot of kids end up walking in body casts, and that it's ok for them.

The main problem was that while she couldn't walk we let her watch Teletubbies and Pooh as often as she wanted to, and even now we're still trying to "cut down."

[IdentityCrisisMama]

I'm so sorry. All the things you said you're worring about would be the exact things I thought about. You are a wonderful sensitive mama and that's what will carry you both through.