Arthrogryposis is the name given to a group of disorders characterized by multiple joint contractures throughout the body present at birth. In the U.S., it occurs about once per every 3,000 live births, and affects both males and females of all ethnic backgrounds.
Arthrogryposis is usually caused by decreased fetal movements in the womb. The fetus needs to move his/her limbs to develop muscle and joints. If the joints don't move, extra connective tissue develops around the joint and fixes it in place.
There is no cure for arthrogryposis, but early vigorous physical therapy can help stretch out the contracted joints and develop the weak muscles. Splints can also help stretch joints, especially at night. Orthopedic surgery may also be able to relieve or correct joint problems.
So this is a very brief overview of what we may be looking at. I had my ultrasound on Tuesday evening at the University Hospital Fetal Diagnostic Center. The baby wasn't sitting on his head, so we got a good look at his feet, which were concluded to be club feet. Instead of being on his feet, he was upside down on his head. Seriously. It's either one extreme or another. :) The nurse tried to push him around, but as we already know, he is stubborn.
His overall position (physical, not position in the uterus) hasn't changed much. He still has his ankles crossed with his legs slightly bent and his hands in fists up by his face ready to box whoever wants to fight. :) Dr. Burne came in and tried to get him to move his arms and legs to see how progressive the arthrogryposis might be..
She wanted to check at which joints he is able to move. So she took a hold of my stomach and shook him pretty hard and we watched on the screen to see if he would move around. It took a couple of tries, but we did see him moving at his hips and his knees. Then after a few more tries he did flex and open one of his elbows, but because of the way he was basically standing on his head and wouldn't move, we only saw one arm. We weren't able to see everything that we wanted to, but I was proud of him moving as much as he did. I was laughing and saying "GOOD BOY!" Dr. Burne and the nurse were laughing at me. There was of course no movement at his ankles and wrists, and he still hasn't opened his hands. I haven't seen his fingers overlap, and I'm hoping that they don't.
Bleu and I had decided that we didn't want to do any more testing. Dr. Burne told me that there are a few different kinds of Arthrogryposis. One type is pretty mild where the only things effected are the feet (club feet) and hands. Another is more severe where all of the arm and leg joints are effected either permanently extended or bent. There is a type that is progressive and is where all of the joints are effected, and the tissues preventing the joint movement build and swell also effecting organs such as the heart, lungs, and can move into the back. With this particular type, the baby sometimes won't carry full term, or die within the first year of life.
Dr. Burne suggested that I come two weeks later to see if there is any progression in the limit of movement. I told her about mine and Bleu's decision, and we talked about the advantages or disadvantages of doing routine ultrasounds. I told her that it might worry me to have appointments so often. So she suggested that maybe we could do a monthly ultrasound and check his growth as well as his movement. I told her that I would be having a check up with Dr. Luikenaar on Monday and discuss what might be the best thing to consider.
I talked to Bleu and he still doesn't want any more testing or extra ultrasounds. I think that if there is a progression, it would be a good thing for us to know, see how much progression there is, and then we can be mentally prepared for what is to come.
Bleu and I have both been praying about our situation and we are both comforted by the Spirit that everything is going to be alright. And it will be, but in my mind, that doesn't mean that I should sit back and watch life go by. I am going to play a part in this-I'm not going to just let it roll. Just because everything's going to be fine doesn't mean that my work is done for this assignment. It means that we are going to make it through, but what we do with it and how we handle it is the question. I will admit - I am scared. But I can face my fears better if I have been prepared. In D&C it says "But if ye are prepared ye shall not fear." I've made my mind up that there is nothing that can keep me from loving my son, and I know that Bleu feels the same way.
I feel like the best way for me to take this assignment is to have an understanding and to be prepared. I have done some research, and I'm more familiar with Arthrogryposis now than I was when I first heard Dr. Burne telling us about it. I feel like that knowledge can prepare me to make important decisions that I feel are right instead of going in blind and relying on what the Doctors tell me. I have someone right beside me leading me that knows a whole lot more than any doctor. But this is a joint effort. If I don't do my part, He can't do His part. I need to be prepared and know what's going on so we can work through this together.
I also know that another part of this is that Heavenly Father is teaching me that I can't do some things on my own and that I need to learn how to ask for help. Thank you everyone for all of the support that you are to us and the understanding, patience and prayers. Mom, thanks for being my shoulder to cry on (again and again and again) and being there to pick up the phone every time I call. Torrie, thanks for being my personal drill sergeant and encouraging me to be my best. Cheena, thanks for listening to my mindlessness and making me laugh.
I love you all, thanks again for everything you do.
Julia 19 Months Old
2 days ago