Dec 2004
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PLAGIO INFORMATION
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BRACHIAL PLEXUS INFORMATION
Jaxson arrived with the help of a vacuum. He had been stuck and I couldn't push any longer. He arrived a very large 9 lbs 15 oz. They did say he had a large hematoma on the back right side of his head and he wasn't moving his right arm. They didn't tell us WHAT the problem was, just that he would need to be monitored in the nursery. We spent five days in the hospital due to complications with both of us. When we went home, we were expecting a happy, "normal" life.
Jax started moving his arm so we assumed it was getting better. At his 2 week visit with the pediatrician, I did tell the doctor that Jax wasn't moving his head at all to the left. The doctor said that is normal, that he is probably still in shock from the birth. That was it, nothing more. I was not a first time mom, but still trusted the doctor.
At Jaxson's 1 month, I brought it up again, nothing came of it. Then, at his 2 month, I was in tears. By this time Jaxson's head was very flat in the back right side. His pediatrician referred us to Gillette Childrens. Jax was diagnosed by that doctor with having Congenital Torticollis, also known as Wry Neck. He would start therapy that week.
Jax was in physical therapy twice a week. Then, they decided he would need occupational therapy as well. We began that and eventually were up four times a week with therapy. At four months, he was referred to a Cranial Facial Doctor for his plagio. December 4, 2003 Jaxson received his CranioCap. I was devastated. The very thought of having to make him wear a helmet was horrible and I cried for several hours that first day.
Our first outing with him was terrible. I hated the way people would stare at him. I could see them, and hear them saying something. Some would just stare, others would actually point. While in line at a store, one guy went as far to ask me if he played hockey. Come on people, he's not even a year old!
At six months, we finally got answers to some of our questions about Jaxson's arm. He had to see a neurologist due to his delays and the nuero asked if Jax had a Brachial Plexus. I honestly had no clue, said nothing had been told to us. He ordered an MRI for Jax. I requested copies at that point of all of his medical records and what I found out was shocking. At BIRTH, Jax was diagnosed with a Brachial Plexus or Severe Shoulder Dystocia. He was also diagnosed at BIRTH with torticollis. Not one word was said to us.. not one.
Jax had his MRI done, with the results coming back that he has an Arachnoid Cyst. This is located midline just anterior to the posterior portion of the corpus callosum. He would need a repeat MRI in 6 months to see if it was growing. He was also diagnosed with hypotonia.
All during this time, Jax was being followed with his CranioCap. He would go in weekly for fittings and for the helmet to be shaved or adjusted. He had a follow up with the Cranial Facial doctor in April and we were told that he could discontinue the helmet. I KNEW he wasn't ready and stressed my concerns to the doctor. His advice to me was that Jax would continue to round out and that he would be ok. I was not ready to give it up, but he wouldn't write a new RX for another helmet, as Jax had outgrown the one he was in.
Every month I would stress to his pediatrican my concerns about Jaxson's shape. Every time, it went nowhere. I had a very hard time even bathing Jaxson, seeing his head shape and knowing what he would face as a child and then into adulthood. I wanted the best for him. I struggled over my decisions for a long time before finally, at 15 months, I took him to Hanger. They did a scan of his head that day and told us he would have the helmet within a week. WOW! That was easy!
The very next day I received a call from them. I was told that we would need to have Jax Xrayed to see if he was fused. I called his pediatrican (who by this time, I had changed). Xrays were ordered and completed the following day. The results came back and yes, he was fused. The helmet would not work at this point and we were sent to a nuerosurgeon.
The surgeon ordered a CTScan and on December 7, 2004 we were given the news. Jaxson is now scheduled to have surgery to correct that poor noggin on January 10, 2005. The exact name of the surgery is Bilateral Parietal Occipital Craniotomy with reconstruction of the skull. This little guy is about to face something that nobody should have to go through. Had the doctors only listened, we may not be here right now.
I encourage every one of you to seek the treatment your child deserves. If you feel something is wrong, PUSH THE DOCTORS! If your doctor won't listen to you, find another. Do it for your child.
**UPDATE**
Surgery was done on January 10, 2005. Please click HERE to read the story.
