Sunday, December 30, 2018

Our Journey with Pseudarthrosis

My first born was so beautiful. Such big beautiful brown eyes. A beautiful smile. Cute toes. We were in love.

One day I noticed that his leg was curved a lot. I pulled out my copy of What to Expect the First Year. All babies' legs are curved, it said. OK.

When he was three months old, I brought him out to see my mom. His leg is not right, she said. All babies' legs are curved, but not like this. 

When I got home, I took him to his four month old checkup early, to the local doctor. They x-rayed his leg. We don't know what this is, he said. We'll make him an appointment at Children's Hospital.I took him to the orthopedics PA at Children's Hospital. This is a big problem, he said. You have to see the orthopedic surgeon- this is beyond what I can help.  His fibula is in two pieces. It will never heal. He will most likely break his tibia, which is curved. It will never heal. They can amputate and at least he can walk with a prosthetic.It's called pseudarthrosis. The word means "false joint". The body treats the broken bone almost as if it is a joint and will never heal it, like your lower leg and thigh will never grow together. My beautiful, perfect little boy.

He was fitted for a brace that day. The tibia was weak and if he tried to stand on it, it could break, never to heal again. He needed the support of the brace. We were almost waiting for the tibia to break.

Years went by. He never broke his leg. He walked. He ran. He jumped.

I don't like his ankle, the orthopedic surgeon said. It will cause him problems. He will eventually be in constant pain. She proposed a surgery. She would try to fix his ankle. She would try to heal his bone. There was a 50/50 chance it would work. I could not fathom taking an active preschooler and subjecting him to a surgery that may or may not work.

And so began my quest to find a better solution for him.
I started semi-locally. Denver. Colorado Springs.
Another orthopedic surgeon who told me he literally had never seen that before.

We decided to go out of state.
New York City.

Answers were varied.

And then my other son was diagnosed with a brain tumor. Our world changed. My son's leg had to be put on the back burner.

My son continued to grow. He never broke his leg. He played tee-ball. He taught himself how to run and compensate for his weaker right leg.
But his ankle looked worse. And worse.

He will have better function if you just amputate now, the other orthopedic surgeon said. He can play sports. He will not be in pain or need to endure multiple surgeries. If I wasn't in so much shock, I would have punched him.
My baby has cute toes. He plays tee-ball.

That was a turning point. I knew that I could no longer put my son on the backburner even though his brother was on chemo. Our children's hospital wanted to cut off his leg. I needed to find him a better solution.

St. Paul.
I took him to a part of the country I had never been to before, to get the expertise of a certain doctor who was excellent with pseudarthrosis. We scheduled surgery. This surgery would heal the broken bone and fix part of the ankle, but he would still remain with an ankle problem, although less of it.

Salt Lake City.
I didn't go there, but was able to take my son to the doctor from there when she came to Denver.

Who is this Florida doctor? A 100% success rate?!
We need to make this happen.
Dr. Feldman at the Paley Institute examined my son. He proposed a different surgery with different surgical methods than anywhere else. He would fix my son's leg, for real. And it would heal, 100%. He wouldn't have any restrictions. His leg would be "normal". We scheduled surgery in Florida and cancelled surgery in Minnesota.

In the fall 2017, we got a Big Van. We took the trip of our lives. 1900 miles from the Colorado Prairie to West Palm Beach to take my son for his leg surgery and stay there for two weeks post surgery while he healed.
His surgery went beautifully. He had a series of five casts. He was non-weight bearing for eight weeks. He used a wheelchair and a walker.

My son is now running. He has a slight leg length difference and hardware in his leg, but his bones have healed. His ankle and other bones are properly aligned. His leg length difference will be fixed eventually. But he's running. Amputation is no longer on the table.

We went back to Florida and he had his hardware removed.

My baby has cute toes. He is now nine and running. (Yes he limps a little when he runs.) I am amazed at his leg, his ankle, his healing, and his progress. He is still wearing a brace for some extra protection, but he will eventually be able to ditch the brace as he gets stronger.

I am so thankful for Dr. David Feldman at the Paley Institute. Due to your surgical methods and skill, my baby still has his cute toes. He is running and ready for tee-ball this season.

If any of you readers stumble upon my blog and are looking for a solution to pseudarthrosis, the answer is in Florida. Dr. Feldman made a video here where he details his pseudarthrosis surgical procedures and why they are different than elsewhere.

Note: out of respect to my son, I have purposely omitted any pictures of his leg from this blogpost. My son is so much more than pseudarthrosis and I don't want pictures of his leg to come up on an image search.
I did think it was important to share our journey with pseudarthrosis. There is not much information out there. I wanted to share my son's story.

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