A New Diagnosis: Hip Dysplasia

Ever since Em was young, when she first started PT at nine months old, hip dysplasia was a looming thing that the therapist constantly talked about. For kids who don't bear weight on their legs by either walking or standing, it leaves a lot of room for error when it comes to the development of the hips. Pair that with the fact that Em "w sits", instead of sitting correctly, and well, she basically put her already compromised hips in a worse position. 

No one in Georgia ever felt the need to do x-rays to check on Em's hips, so we don't know for sure how long she has had this or not. A few weeks ago though, we went to the Dr because Em wouldn't stop throwing up, and they did an x-ray to make sure her stomach was okay, and as a bonus, they found the hip dysplasia, and determined that her right hip was 50% subluxated, or basically on it's way out of the socket. (I think that's proper layman's terms).

At this point we were already in the process of switching Em from Primary Children's Hospital to Shriner's hospital to reduce medical costs for our family, so when we got to Shriner's a week later, they confirmed the diagnosis with more x-rays and gave us three options. 

The first option is botox. There is a chance that they can inject botox into her tight leg muscles, and once the botox kicks in, it will cause the muscles to relax, and put less strain on the hips.  If the hips aren't being strained by the muscles, there's a chance that the hip will go back to where it should be. 

Option two involves going in and cutting the muscles that are connected to the hips. Doing this would mean the same thing as the botox, cut the muscle, less pressure on the hip, everything goes back to where it belongs. The only problem is that this is the surgery they do on babies born with hip dysplasia and since Em is 3 1/2, they think that she might be too old, and her bones and muscles might be too developed, and this surgery might not be successful. 

Option three is a lot more complicated. I honestly haven't looked into all the details because I'm just not mentally ready to take my brain to that place, but it involves cutting her open, and then sawing and cutting bones and putting them back where they should be, putting her back together, and then her being in a body cast for three months. There are four reasons why we don't want to do this surgery, and they're as follows: 

Em has never been under anesthesia for that long before, and I worry about what potential adverse reactions that could have on her brain. She is so prone to having seizures (and thankfully has made it this long without having one!), that I worry about any new medication or thing being given to her, because I don't want it to be the thing that tips off the seizures and sends us down that road. 

Likewise, if she has the surgery she'll need to be on strong pain meds and I worry about them causing seizures and being too much for her as well. 

I also worry about me being able to care for her in a full body cast. Our home is four floors and I worry about carrying her up and down stairs all day long and what our lives will look like for three months as she recovers. 

Most importantly, for three months she won't be able to walk in her gait trainer, or crawl around our house. She will likely lose skills in that time, and I worry about how long it will take her to gain them back in PT after surgery. It took her three years to learn how to sit, crawl, and walk in a gait trainer, and I don't want to take that away from her if I can help it. 

Where we're at right now is this: If her hip stays right where it is right now, or gets any better (as in going back in towards the socket), then she is fine and won't need surgery. She starts botox on March 19th to see if this non-invasive approach will work for her or not. She is also currently seeing a chiropractor. I hesitate mentioning this because people can be so judgemental when you mention that you're seeing a chiropractor, but I love the one that we go to and fully trust and believe that he knows what he's doing, and I believe he would tell me if he didn't think he could be a benefit to Em. 

We went to the chiropractor for the first time today. He looked through Em's x-rays and saw that part of her pelvis was not in alignment with where it should be, and he adjusted her and essentially put it back in place. He then told me that the adjustment won't be worth anything really if Em doesn't continue with PT, standing in her gait trainer, bearing weight on her legs, and sitting correctly. He hopes that his adjustments can be an aid to the recovery process, but certainly won't be the end all be all. We will likely go in for adjustments every two weeks until further notice.

A few days after our initial visit at Shriner's we saw our PT who told us that with botox, and sitting correctly, there is a good chance that we could correct the hip dysplasia without surgery. And this seems to be the same message that I'm getting from the chiropractor as well. I truly believe that with each of these doctors, and each of their specialties, that Em has the best shot of beating this whole hip dysplasia business and that we'll be able to keep her out of surgery. A lot of it is diligence on our end to make sure she sits correctly while playing, and then helping her with standing and walking as well. But I truly believe that the right people have been put in our path to help this little girl, and together, we will fight. 

1 comment

  1. You can do this! You are a strong mom! The spirit will guide you.