I’m getting past my fear and my anger and going to post this blog to hopefully help other families who are going through or maybe prevent this from happening to their child. This blog is not going to have a set time for release. It could be several times a week or just once a week. It honestly depends on how our healing is going (and I say ours because as a mother, I’ve grieved with her, I have grieved for her, I have raged against the doctors who wouldn’t listen to me and I’ve come to acceptance, all forms of healing). My daughter has super good days but she also has super bad ones so I need to be there for her. With that being said, I hope that this can help others who are going through this.
What is this blog all about? Well, this blog is about doctors not listening to parents. This blog is about parents learning to take control and having a voice for their child. This blog is about what to expect if your child has to go through this procedure. This blog is for venting and also offering support in the knowledge that you are not alone. Most importantly this blog is to let you know to accept all of the emotions! Don’t let someone that you shouldn’t be scared, angry, upset, worried. DO feel those things! You are supposed to! God, the Universe, whoever you believe in (or don’t) gave us emotions to experience. NOT JUST THE GOOD ONES! So accept those emotions, they are there to guide you, let you know you are still alive and they are a part of you.
So a quick rundown because I’m sure our stories are going to be similar. When Madison started walking, my husband and I noticed right away that her feet weren’t right. We took her into her pediatrician and he told us that she was pigeon toed and would probably grow out of it. We accepted that and as with life, other things came up and we couldn’t address it again until she was six. We were living in another town at that point and took her to the pediatrician there. We were told similar stories. She was pigeon toed; she would grow out of it. It just didn’t feel right so we took her to a pediatrician in Steamboat Springs who told us she was double jointed and she would excel at sports. This explanation sounded even worse but every doctor we took her to up there told us there were no issues. She would be fine.
Fast forward to her now being thirteen years old. She’s still having issues with tripping, wearing shoes out irregularly and just being uncomfortable. It’s documented on all of her yearly exams but nope, there’s nothing that can be done for it. That summer, she stopped riding her horse as much. When we asked her why, she said her knees and hip hurt. We knew it was related to her legs and took her into her pediatrician and demanded that we be referred to an ortho. The orthopedic doctor took x-rays of her legs, examined her and said that one leg was slightly longer than the other one and she needed to have a lift put in her shoe. It didn’t sound right but at least we weren’t being told that it was normal.
She wore the lift for a couple of months but got progressively worse. I refused to take her back to that orthopedist, frustration that nobody was taking us seriously was mounting. Finally my husband took her in to her pediatric doctor and was adamant that something had to be done. They prescribed physical therapy and the following week he took her into her appointment. I still don’t have this gentleman’s name but I love him. He made her walk, took one look at her and said he couldn’t do anything for her. The turn was NOT in her lower legs, it was in her upper legs and no therapy would help her. He recommended she go to the gait clinic at Children’s Hospital in Aurora. The appointment was made but we had to wait three months before we could get in. In the meantime, the pain in her hips were getting worse and she stopped riding her horse.
The staff at Children’s Hospital was amazing and they had a team of ten professionals to go over all of her tests and videos. No stone was going to go unturned until they had answers. Unfortunately, we wouldn’t get the answers until January and it was the worse news we could expect. Both of her femurs were twisted. Because of this deformity it was causing undue stress on her knees, hips and spine. Degeneration was already happening and surgeries were recommended immediately. Unfortunately, the only surgeon who is properly qualified and experienced to do the surgeries was booked until May 20th, 2019. We would have to wait until then to get her surgeries done.
Here’s where it gets interesting. With this type of surgery, they have to break both femurs (thigh bones) in half, rotate the lower legs until they are in proper alignment, slip a titanium rod down through the center of the thigh bones, screw in bolts/screws into the hip at the top and also above the knee to hold the bones and rods in place until the bones heal. Because her muscles, nerves and tendons will be rotated also, she will be learning how to walk all over again. Her brain has to relearn how to talk to new muscles to allow her to learn balance, movement and stability. We were basically going to have a one-hundred- and fifty-pound toddler.
The part that makes me so very angry, even to this day; if any doctor had listened to me, if I hadn’t accepted their bullshit and had fought for my daughter, they could have put braces on her legs that she would wear at night that would have corrected her thighs. NO SURGERY! But because her bones have already solidified, the only way to correct it was surgeries. And they wanted to do both legs at the same time. Great.
Another problem that we were fighting with was that because it had been gone undiagnosed for so long, her left hip was already being worn irregularly and there was damage to that ball and socket. The surgeon was hopeful that once her legs were put into proper alignment that inflammation would go down and hopefully, we can reverse any kind of injury without surgery but we won’t know until she is completely healed, which is a 9-12 month process. This isn’t a sprint, that is for sure.
I’m going to wrap up this post for now. I need to get my daughter up to the bathroom, feed her and give her the pain meds she’s on but I promise I will next write about the surgery and hospital experience. There were things that we weren’t told that I think all parents need to know. Remember, if your child is pigeon toed, walking irregularly, their gait is off, go get a second opinion. Maybe even a third, fourth or fifth. If it just doesn’t sit right with you, follow your gut. You were given emotions and instincts for a reason.
And any doctors out there reading this, a little piece of advice. ALWAYS listen to horse moms. We have been trained to watch with an eagle eye if a horse’s gait is off. We know immediately and instinctively that something is wrong. We have that same gift with children. Don’t blow us off, we might actually know something that you should listen to.