Our sweet baby boy, Gibson Robert Lewis, was born on November 12th, 2014. The pregnancy, labor and birth all went pretty smooth. He was born naturally and was three weeks early. He weighed 7 pounds and 4 ounces. Gibson wanted to come out 5 weeks early, but I was put on bed rest. He’s our first baby and we are just so in love with him. He’s a very happy and healthy boy. When we were in the post-natal care in the hospital, several people including family and nurses all commented on his crooked little nose and squinted eye. We all thought that it was just molding from birth. Especially since he was ready to come out so early and just sat in my pelvis for a while. We went home and we were just so happy to have our new bundle of joy. I remember looking at Gibson’s 4 weeks picture that my husband took. His face just seemed different and I’ve never seen a baby’s face pulled to one side like that. I remember thinking to myself that he’ll grow out of it. Just give him some time.
At around two months old, my husband and I were giving Gibson a bath and I was holding him in front of the mirror. His face was very different. I remember being extremely worried and thinking that he should’ve grown out of the molding by now. When my husband was at work I would pass in front of the mirror and just stare at him. I was so confused and once again have never seen a baby look like this. I was very careful about telling family and friends. I didn’t want people to think I was judging my son. I told a few people and no one seemed to notice or thought that it was that bad. I brought it up to our pediatrician twice and both times he passed it off as molding. The last visit with him, he referred us to a neurosurgeon. I thought that his referral was pretty harsh especially since he didn’t seem to think anything was wrong. I decided to take Gibson to a chiropractor that specializes in plagiocephaly. I thought maybe Gibson had plagio because some of the characteristics matched up. They also thought that it was crazy that we were referred to the neuro. I also decided to go to a different pediatrician. I chose an osteopathic pediatrician. He thought that Gibson may have torticollis but reassured me that taking him to the neuro couldn’t hurt anything. By this time, I had done quite a bit of research online. Somehow I stumbled upon the Cranio Care Bears website and a few others. I had a feeling he had synostosis but thought that maybe I was just being overprotective and maybe researching too much. I thought I had the worst case of PPD ever because I thought I was seeing something that no one else did. I saw pictures of other babies with the unicoronal synostosis and Gibson had a lot of the same characteristics (nose tilted, one eye tilted back, his forehead came out more on the left side and the other side was pushed back, ridge from the soft spot down towards his ear).
We finally took him to the neurosurgeon and the doctor took one look at him and diagnosed him with Right Coronal Synostosis. She said that they would confirm with a CT scan. My fears came true. I’m really glad I was persistent. If you’re reading this right now and you are worried that your child might have this, seek help. Trust your instincts. Push your pediatricians for a referral if you are really worried. I felt like I was on my own island for a long time. Our neurosurgeon and plastic surgeon reassured us that it was a routine surgery and that he would recover quickly. They do 2-3 of them a week. We were still terrified and nothing can prepare you for the stress and worry. Gibson had cranial vault remodeling two months later (6 1/2 months) on May 26th. He was 6 1/2 months at the time. The surgery went very smooth and lasted about 4 hours total. Those hourly updates were a must and kept us going from hour to hour. We got to see our Gibson about an hour after surgery was finished. Gibson is amazing and healed very quickly. We went home 4 days post op. He had a drainage tube in his forehead and that really helped his eyes from swelling shut.
Looking back, it was the scariest and most stressful moment that we’ve ever had. We felt so bad for Gibson. He bounced back so quickly. It’s amazing to see how resilient babies really are. By day three, he wanted to roll over and play. He even gave us a few smiles as early as two days post operation. Today marks exactly one week from his surgery. I can reassure you that if you have to put your child through this, it does get better. We went to the zoo yesterday and went on a hike today. I wanted to share our story because a few months ago and leading in to his surgery, I wouldn’t have been able to stay this strong without reading success stories that other families shared. Feel free to contact me. (jamandalewis@gmail.com)
