Rollin's Journey with Craniosynostosis

It is December 13th and we are still at Children's National Medical Center in Washington, D.C. in the neurosurgery recovery ward following Rollin's December 9th surgery for metopic suture craniosynostosis. I wanted to write a quick thank you to all our family and friends for all their support over the past few months as we prepared for this surgery and spent countless hours at different doctors appointments and specialists trying to get Rollin diagnosed and scheduling his surgery. Rollin continues to amaze us with his spirit and determination and we are so proud of him.

Here is a brief recap of Rollin's journey from diagnosis to surgery: in utero Rollin had been diagnosed with a few abnormalities- namely partial absence of the cerebeller vermis, two vessel cord, echogenic foci on the heart and duplicate collection system in both of his kidneys. In light of the abnormalities seen on ultrasound, I was seen prenatally at CNMC and had a fetal MRI and other tests. I was followed extremely closely and had weekly ultrasounds. When Rollin was born, the pediatrican on call said he had "an abnormal face" which was fairly offensive to us as parents, as we thought he was as cute as a button. At four weeks of age, we went back to CNMC for follow up testing on his fetal abnormalities and discovered that his vermis was now fully present (which is nothing short of a miracle since it is supposed to be fully formed at 18 weeks gestation), however, at that time we discovered that the suture in his forehead had closed prematurely. That began our process of meeting with neurosurgeons and plastic surgeons in the Washington, D.C. area to find the right team of doctors to perform Rollin's surgery.

After numerous interviews, we chose Dr. Robert Keating the chief of neurosurgery at CNMC to perform the neuro part of his operation and Dr. Michael Boyajin, the chief of plastic surgery, to perform the plastics portion of Rollin's surgery. They did a fantastic job and Rollin looks amazing. The first 24 hours after surgery were very difficult, he was cranky and upset (which was hard for us because he never cries), but each day he got better and the tubes started coming out and our little boy came back. We are now one week post op and he is doing fabulous! His eyes are still a bit swollen, but he is happy as ever. Here are some pictures of his operation.