How Did I Feel when I found out My Child had Craniosynostosis? by Michele & Peter Connelly

Steven was my Miracle Baby. I had previously suffered several miscarriages, so to actually carry a child to term was quite an accomplishment for me. Steven is my second child. My first son Christopher was born via an emergency cesarean section due to the cord being wrapped around his neck. I was asleep during the entire delivery. We were eagerly anticipating Steven’s birth, and I was looking forward to actually experiencing the birthing process. 

At first sight, Steven was perfect. Then about two months later, my husband and I saw it. The misshapen head, the forehead that popped out like a beak, and his eyes bulging more than normal. I was too frightened at first to investigate. The pediatrician said, “Let’s wait it out and see if he outgrows it.” By the time Steven was five months old nothing had changed, and it was time to take the next step. We saw a pediatric genetics specialist in Blythedale Children’s Hospital in Westchester County, New York. This is when I heard the news: Steven had Craniosynostosis. I stood in the doctor’s office, frozen in fear with all of these horrible thoughts in my mind. “What exactly is Craniosynostosis? What was going to happen to my son? Was he going to survive? What were the long term effects going to be?” I felt like my heart was being ripped out of my chest. All I could do was cry and hug the doctor, begging him to make Steven well. 

The next thing to cross my mind was “Michele, you’re a horrible mother. You passed this condition to your son.” The night we came home from the doctor, I couldn’t sleep all night, gripped with fear, afraid for my son’s life and again thinking to myself “This is all my fault.” Once I calmed down, I realized that I had to be strong for Steven. We had a long road ahead of us, and having a mother who was hysterical and crying all the time was not going to accomplish anything. Now we had to face the surgery. Our surgeons made us feel as comfortable as possible regarding the severity of the surgery. They answered all of our questions, and calmed our fears as best as they could. We were as prepared as we could be, facing the unknown and putting our son’s life in the hands of virtual strangers. 

The surgery was a nightmare, one of the worst things a parent would ever have to go through. When Steven came out of surgery, all I could do was stare at him, hold his hand and say to myself, “Why Steven?” He was unrecognizable from all the swelling, and all I could think of was “Please don’t let him die. Please let him survive this and live a normal life.” Steven was hospitalized for three weeks, having picked up a bacterial infection in the hospital. He was on IV antibiotics for about six weeks. We had to have a nurse make home care visits to give him the treatments. 

Fast-forward seven years, and Steven is incredible. He is a smart, intelligent young man who makes friends with everyone immediately. He is an orange belt in Karate, and learned to ride a two-wheel bicycle at four-years old. The scars from his surgery are virtually unrecognizable. He truly is my Miracle Baby.