On Monday, November 2, we returned to Seattle Children's. Our visit was scheduled weeks earlier than anticipated. This time we had back-to-back appointments at the craniofacial clinic that took a few hours. The baby saw a pediatrician, a social worker, and a craniofacial plastic surgeon, Dr. Gruss. He walked into the room with a cohort of doctors from all parts of the world--Asia, Africa, Europe. After this team of doctors left the room, I asked the craniofacial nurse who all those doctors were. She said that Dr. Gruss usually has an entourage of doctors following him because he is well known in his field.
We think we have a final answer to what is happening with baby Tito, thanks to Dr. Gruss. This doctor has seen hundreds of similar cases in NF patients of all ages. The baby was born with a classic birth defect related to NF. There is no normal eye socket on the left side. As a result, the brain is seeping down and pushing out the eye. The sphenoid bone is disfigured (dysplastic) and bulging out of the left side of the baby's head. There is also a pocket of fluid but no tumor.
The doctor wants baby Tito to get stronger and to grow before doing surgery. Around his first birthday in the spring, the baby will have surgery in Seattle. The doctor indicated that it will be a lengthy surgery. I asked if this is serious. He said that it is not so much serious as it is specialized. It will involve himself along with a neurosurgeon. They will open the baby on top of his head in a zigzag to prevent any scarring on his face. The neurosurgeon is needed to hold the brain back and put it in its natural place while the craniofacial plastic surgeon builds an eye socket out of titanium mesh. Recovery will probably involve a short stay in ICU followed by 4-5 days in the hospital.
I look at my son and enjoy every moment I can before surgery takes place. I want to remember my son without scars. I will love my son with his scars and be there to hold him tight.