Devyn was born October 3rd, 2005. The pregnancy and delivery were anything but normal. I had a sub-chorionic bleed until my 5th month of pregnancy that almost caused me to miscarry. The delivery started out normal until I started to push…. He got stuck twice and then was not breathing when he was born. After they resuscitated him he was fine except for his purple and blue bruised face.
Devyn seemed very healthy as a baby except for a milk allergy. He rolled over early, sat up at 5 to 6 months, and started crawling at 9 months, and walking at a year. It was then when we noticed something alarming. He stood in front of me one day in just his diaper, when I noticed that his back looked different. I mentioned it to my husband who knew it was there, but found it easier to pretend there was nothing wrong. We had a family get together for Thanksgiving, and I asked my mom and sister what they thought. They too said it was not normal and something was wrong.
The first week in December we had an appointment with his pediatrician for his shots, and I asked her to look at his back. She said that it was curved and that we needed x-rays and to see an orthopedist. Sure enough, the x-rays showed that he had scoliosis with a 24-degree curve in the lumbar area. The Orthopedist wanted an MRI to see if the spine was tethered at the base. So on January 11th we had the MRI done, what an experience—that drained us all. The results showed that the chord was not tethered and he had abnormally shaped cerebellar tonsils. The Orthopedist said that the pediatrician needed to refer us to a neurosurgeon and that she didn’t want to do anything at the time for the scoliosis, and to come back and see her in 4 months. So we saw our pediatrician again and she said we were not going to watch and wait. She sent us to Children’s Hospital in Denver to see an orthopedic surgeon for the scoliosis and a neurosurgeon.
We saw the orthopedic surgeons PA on February 2nd, 2007. He told us that he could definitely do something to help correct the scoliosis from progressing. He explained the early treatment process with the POP jackets and how it works. He said that we had to see the neurosurgeon first to make sure there were no neurological problems that would be affected by the casts.
March 7th we saw the neurosurgeon, who informed us that Devyn had Chiari Malformation along with his progressive infantile scoliosis. Chiari Malformation is where the lower part of the back of the skull does not form properly and is flat rather than curved. This pushes on the cerebellum (part of the brain) and causes the cerebellar tonsils at the base of the brain to descend downward into the spinal canal instead of under the skull and can cause pressure. This can cause the balance to be very unsteady, headaches, numbness, and in severe cases paralysis. He did not believe that the two were related because the Chiari malformation was not severe and not causing pressure on the spine. He told us at first that he wasn’t sure that surgery for the Chiari was necessary. He then asked if he could keep the MRI and share it with his colleagues to get their opinion. Of course, we had no problems with that—I want the best for my baby. The week after our appointment I received a call from the doctor himself. He explained that he shared the films with the other doctors and they decided that the surgery was necessary to make sure the two were not related.
On March 29th, 2007 Devyn had decompression surgery for the Chiari Malformation. They opened up the back of his neck and cut out half of the C1 vertebrate, and took out the left cellebellar tonsil, and cut the right one back. They also opened the Dura, which is on the back of the brain. He spent four days in the hospital, and is doing great. We have noticed small improvements of things we never knew were wrong with him. His balance has improved greatly; he used to scream in the car non-stop and now is not bothered by car rides. These are things we didn’t know because he was too young to tell us.
Although these things are better his scoliosis had not improved. They did x-rays on March 7th after his appointment with the neurosurgeon. His curve had progressed to 37-degrees and his rotation was at 30 degrees. His right foot turned in like a pigeon when he walked and seemed worse every day. His curve also looked like it was getting worse.
We were finally cleared for Devyn to get his first POP jacket on May 9th 2007. They did not do x-rays when they casted. The doctor tries to expose them to as little radiation, as possible. They were figuring the curve at a little over 40 degrees at the time he got his cast. He did better than we had expected in the hospital, a little mad at first but got used to the idea that it wasn’t coming off. The first week was a little rough as he had a hard time adjusting and moving in the cast. He couldn’t bend over or sit on the floor and sleeping was really hard at first for him, as well. After the first week he improved, and he learned how to accomplish something new every day. After two weeks he was back to his old self, getting into everything and climbing on everything.
On June 8th we went in for his first x-ray in cast. The doctor walked in and said, “refresh my memory, what did we start at?” He handed us the x-ray and told us to guess….. I was amazed, the x-ray looked almost straight! He said it measured 15 degrees and hopefully one more cast and a good growth spurt should do the trick. On July 6th Devyn received his second cast. They didnt x-ray on the day of casting this time either, they used the numbers from his last x-ray. On August 9th they took his in cast x-ray. This time it measured 10 degrees. As you can imagine we were very happy. The doctor said lets do one more cast to see if we can go any lower or if we hold this degree.
On September 10th Devyn received his third cast. We followed up on October 5th for his x-ray. The curve was holding at 10 degrees. We are still so happy because it’s better then when we started! On October 27th they took off Devyn’s cast and molded him for a brace. He received his first brace on October 31st. They did an x-ray to make sure the brace was adjusted correctly. He still measured 10 degrees. He wears his brace all the time except for bath’s and swimming. We went in on November 30th for his first x-ray with the brace, this time they had us take an out of brace x-ray. He is still holding at 10 degrees.
