My Son’s Misdiagnosis of Craniosynostosis.

In 1994, after I gave birth. I was told  I have a healthy seven pound, two ounce baby boy. Handsome as he wanna be. After bringing my son home, as time and life went on. Besides from being a screamer, we named him that because he was known throughout the neighborhood as such. You could hear him a block away. One day he was upstairs  in his crib sleeping, and I heard a loud thump. I ran upstairs to find my son out his crib on the floor crawling. I said oh lord, he learned something new, he learned to climb out the crib. My son was so hyper, he couldn’t keep still. I knew my  days of relaxing was over. Then after while he started kindergarten, then first grade. Which became a learning struggle for him. He started falling behind, which led him to become held over. He continued to struggle, and needed special education classes. As time went on, I’ll say about age eight or nine. We’ll before middle school, I noticed a slight dent in his head. That was right after he caught the ringworm at a family members house. I took him to his family doctor and his doctor claimed the dent was caused by the ringworm. Unknowingly to me, I continued to administer the cream accordingly, until it cleared. The dent was still in place, and at that time we moved to Connecticut and my son was entering middle school. I found him a new family doctor, which referred us to Yale hospital, located in New Haven Connecticut. After his scheduled appointment, X-ray of his skull. He was diagnosed with having Craniosynostosis. Still not educated and wasn’t told of his future symptoms. In 2010, he started having seizures. Now to this day, he’s taking nine pills, two types of medications totaling 3,100 milligrams. His dent in his scalp deepened and his nose is somewhat enlarged on one side. You really have to be close up on him to notice. He use to get very defensive when be ridiculed or teased about his defect, also he didn’t have a understanding his deformity. Until I became more knowledgeable and explained in a way that he could understand. I also showed him pictures and stories that he can relate to. Recently we moved and switched his neurologist. Which in turn wants to lower his medicine. He still struggles academically, but at the best in math. He basically just needs guidance and directions, but above all he’s my gentle giant with a heart of gold and strength of a mule. He’s currently in training for employment and the GED exam. Which he failed twice, but passed the math. He’s a poet at heart. And a comedian, it’s never a dull moment with him around. And, a serious go getter. I wanted to share this story to say if I only knew. But there were no signs at birth, so how would I’ve known. I mentally blamed his pediatrician and his delivery doctor. I was told by a family friend, that technology is more advanced today then yesterday. I just continue to pray. It could’ve been much worse. What I learned is to ask questions and get second opinions, always. I also learned we are not alone. We all have a story. Sharing and helping others to become more aware and knowledgeable is the best gift of giving back.

CRANOSYNOSTOSIS- A misshapen skull, with the shape depending on which of the sutures are affected.
An abnormal feeling or disappearing fontanel on your baby’s skull.
Development of a raised, hard ridge along affected sutures.
Slow or no growth of the head as your baby grows.

just some examples

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