Hi, my name is Candi Oldfield, I live in Clearwater, FL. I’m a stay-at-home mom of three. In 2018 my 3rd son, Eric, was born. It was a wonderful 24 hours with him, until the doctor came in and said he wanted a NICU doctor to take a look. Then he shared with me a word that I had never heard before, craniosynostosis. It took me forever to say this word without stumbling.
When we took our baby home, he was unable to sit in his car seat without his head turning to one side or the other. His head was visibly different. A few days later we went to see a neurosurgeon, Dr. Abilash Haridas at St Joseph’s Children’s Hospital. I was a wreck during this appointment. The doctor opened the door and immediately said, yup, just looking at him from across the room he could see the visible ridges of his sutures, and then the physical exam, it was clear. The diagnosis; sagittal craniosynostosis.
I was told this diagnosis would require surgical correction and helmet therapy for several months after. I was ok, until I got to the car. I then broke down. The only thought I had was wondering what I had done wrong for my baby to deserve this outcome. What did I eat, what did I do wrong for my son to be born with a birth defect? A few days later we went to meet our orthotist, Mrs. Maggie Pierce at Westcoast Brace and Limb. Eric had his first scans done to fit his helmet. About three days later we returned to fit the helmet.
At five weeks of age, my newborn baby boy would have a section cut from his skull so his brain had enough room to grow properly, without this correction he could have further issues, with learning, or blindness, and in extreme cases, death. I had no choice. I watched as they rolled my baby away to cut open his skull. He arrived back in the room much sooner than I expected. My husband did a fabulous job keeping me distracted, and we completely trusted our son’s neurosurgeon, Dr. Haridas.
After the surgery came a long sleepless night, I was up with my son, my tiny son, just lying in the bed with a bandage around his head. I was just waiting for the meds to wear off and for him to wake up and be his normal self again. We arrived back home, and that day began the process of getting used to the helmet, cleaning the helmet and his head daily, and occasionally being popped in the mouth with a very hard helmet. But it became our normal.
We made it through and eventually he graduated, and the helmet went into the closet, where it now sits. One day I will go over all of this with him, let him know how many people helped him, how many people loved him, and why he is so very special.
I learned, eventually, the craniosynostosis wasn’t my fault. It’s just the way God made him, and God chose to give him to me to care for and love. Today Eric is a healthy energetic 4-year-old boy, his head is the most perfect shape ever. One more CAT scan to go in the next several years and he will be complete with his treatment for craniosynostosis correction.
My hope is to help spread awareness of craniosynostosis so that new mothers won’t have to hear the word craniosynostosis for the first time less than 24 hours after giving birth. I want to normalize it, spread the news and help these moms feel seen. I’ve joined a few Facebook groups to help support families dealing with a diagnosis of craniosynostosis. I have also used my artistic skills to create stickers and shirts that I sell on Redbubble to help spread awareness as well.