A few months ago, in a horrific moment of intense pain, Abi’s hip came out of socket. It was loud and awful and I had to call an ambulance. Ten minutes later though…the tears stopped… and she was fine. The paramedics were incredible and her amazing physical therapist quickly came over to help me decide if a trip to the ER was truly necessary. Since Abi was happy and smiling and in zero pain- we decided to wait and see a specialist that week.
Luckily, our pediatrician got us an emergency appointment with a well-revered pediatric orthopedic surgeon at Vanderbilt Children’s Hospital within 48 hours. And sure enough- as I expected- the x-rays showed a grim story. One leg was completely out of socket and another was on its way.
When I saw the doctor walk in with the xray I spotted the dislocation immediately and assumed the dreaded hip surgery was inevitable. To my surprise though, the first thing the surgeon told me was that I had a number of “right-choices” to consider, one of which, was to not do surgery at all. It’s important to mention- a surgery like this is not as simple as “popping it back in.” In our case, it would involve a very intense surgery that would bolt the bones into place, shorten both of Abi’s legs, and more. Not exactly a quick, easy procedure.
We talked about each option- discussed pros and cons- and then made another appointment for 8 weeks down the road. That would give us time to observe Abi, do our own research, and gather more questions. During that appointment we went ahead and scheduled a surgery date- just so we would have it if we decided it was the right call.
It blew my mind how a hip completely out of socket could not be painful, and I wanted to know what I could do to prevent a night like the one where I called the ambulance. The surgeon explained that after the initial pop, it wasn’t painful for Abi because of all of her healthy cartilage protecting the joint. If she turned a very specific way, her leg and hip bones might touch- thus causing pain. If this happened, he showed me how to gently turn her so those bones weren’t touching and alleviate the pain.
That was 8 weeks ago and since then Abi has done great. The first few days I was hesitant to even get her in her car seat, (because I was nervous- not her) but now she’s riding horses again (with a modified side sit), standing tall in the stander, doing well in her kid-walk, and proceeding with life per usual. No pain. THANK GOD.
This being said, around week 4 I went from, “We must do the surgery!” to “Why are we doing the surgery again?” and decided to strongly consider the second option. I officially took my mind out of the surgery-prep-zone, and decided to not jump back in unless our surgeon felt differently. Of course we had concerns about her spine, the success rates of all the options, and more. I spoke with all of her therapists and kept a note of all our questions and we waited for the big 8 week appointment.
All that to say, our big follow-up meeting with the surgeon was last week, and truthfully I was more nervous than expected. I suppose since I had taken my head out of the “pre-op” stage, I was anxiously concerned I would be shoved back into that space QUICKLY (surgery was scheduled for the first of May) if we decided we needed to move forward with it.
But as soon as the surgeon walked in and we began talking, my nerves went away and I could breathe again.
Long story short, we decided surgery is not an immediate need for Abi- and perhaps (hopefully) never will be. In the past, surgery would have been the best option. Up until now there was really no plan B for families with hip dysplasia. Previously, parents that chose to not do the surgery ran the risk of their child developing painful arthritis with no way to fix it. There’s a point when the healthy cartilage is gone and the traditional surgery is no longer an option. A hip replacement isn’t possible for many with neuromuscular challenges, so, naturally, surgeons pushed immediate surgery as a good and proactive way to prevent pain later down the road.
Today, however, there is a relatively new surgery that alleviates the pain of those who develop arthritis in later years and never did the original surgery. (Or for those who did do the original surgery but still developed arthritis). This is a similarly invasive procedure but involves taking off the arthritic parts and replacing the joint with scar tissue. (This is a very loose explanation obviously.) That being said, we now have options.
We can do surgery now, wait and do it later if she develops pain within the next few years, OR if we never do the original and her hip becomes arthritic as a teen or adult, we have an option to alleviate that pain as well. It’s important to note, that 50% of individuals with CP (with an x-ray like Abi’s) never develop any pain at all- even into their adult years- and in turn- never need any surgery.
This is all very good news.
As far as functionality, as long as she is not in pain, we can do all the things we were doing before AND STILL learn to do more. Pain is our guide and nothing is off limits.
In regards to a higher risk of scoliosis, the studies show no real data linking hip dysplasia to scoliosis. Tone is more of the issue. When I asked about a back brace to help offset this possibility, he said PT was the best option, as once again, a brace wouldn’t help with tone. It might, however, help with trunk support if we decided that was something she could use.
All that to say, we are waiting and seeing him again in a year. If she develops pain, he will rush our appointment and get us in ASAP to reconvene.
At the end of the appointment, I said, “Basically- I just want to know- do you think this is the right call?” And he said, “If you want me to say you’re making the right choice- you’re making the right choice. Because of our newer options, there is no wrong choice…” (SIDENOTE: Not all surgeons are doing this new surgery yet. Additionally, this is the reality of our specific case. If Abi’s dislocated leg was even a centimeter closer to her hip bone, it may be a very different story.)
All that to say, I’m crazy grateful for the options we have, the healthy cartilage that keeps that leg comfy and cozy, and the latest developments in medical intervention.