Birth/Diagnosis

Due to Jaxson’s small size and concerns with his Doppler readings of his umbilical cord, I was induced at 37 weeks. The NICU team was ready to intervene after labor, but thankfully no extra assistance was needed! Jax was able to stay with me with just a little extra monitoring of his blood sugar levels due to his small size. He was born at 5 pounds, 8 ounces and only dropped to 5 pounds, 3 ounces.

Birth

I remember saying when I first held him, “He’s here! He made it!”. Pregnancy was so stressful, and I was afraid of losing him the whole time. In utero, we weren’t able to confirm if our little guy had fingers. We looked for them during every scan, but they were always hidden. I can't even find the words to describe how happy I was when they told me he had 10 fingers!

Shortly after birth we realized he wasn't moving his arms. There was no bend in his elbows and he didn't move either arm on his own. His hands were completely flexed down and I could just squeeze my pinky finger inside to hold his hand. At the hospital, no one was able to tell us what was going on with his arms, so we left the hospital with a beautiful baby boy, but without any answers.

Diagnosis

We found Dr. Waters on the internet after searching for months for the best of the best. He was also highly recommended by a friend in orthopedics, so we were ready to take a trip to Boston to meet with this chief surgeon. Miraculously, we learned that Dr. Waters left Boston to be closer to his children and grandchildren. Guess where he relocated.... 30 minutes from our home in Charlotte, NC! This truly felt like fate.

At 5 days old, we were able to get an appointment at OrthoCarolina Hand Center with Dr. Waters. It was at this appointment that we were told he did not have club hands, but Arthrogryposis. Dr. Waters informed us that Arthrogryposis Multiplex Congenita is a general umbrella term for multiple joint contractures. Because of this, every case is very unique and outcomes vary. Jaxson's contractions won't get worse, but through stretching, bracing, and surgery, he can improve. If you google the condition, you will see very heartbreaking pictures. You will also see it state that there is no cure. This was devastating to us and a hard pill to swallow. He showed us how to stretch his joints, and we got started right away. When we asked how many times we should try to do it per day, he told us "a million". We took this to heart and decided to do every time someone was holding him.