Jesse’s Story Jesse is our miracle. He was conceived via IVF and even with IVF our chances were only about 15-20%. When he was born, he had a bit of a rough start. Jesse had fluid in his lungs and then developed severe jaundice, so he spent the first 6 days of his life in the NICU. I noticed the moment he was born that his forehead wasn’t flat, but I didn’t think much of it since he had been surrounded by doctors and nurses and not one of them mentioned it to me.
Then one day, June 28, 2011 to be exact, just 10 days after he reached 4 months I started researching. I will never forget that day when I saw that word for the first time; craniosynostosis. Then I took that first photo. That bird’s eye view that showed the tell-tale sign of metopic cranio. I knew right then and there that Jesse would need surgery. And I cried for days on end. The next day I brought it up to his pediatrician but she kind of blew me off and told me it was nothing to worry about. I went ahead and made appointments with some local craniofacial teams and they confirmed what I already knew; my baby boy needed major surgery.
After meeting 2 different teams, we choose a local team and Jesse had surgery on August 23, 2011, just 5 days after reaching 6 months of age. And he amazed us all with his strength. Less than 24 hours post-op, he was smiling again. Within a week, he was back to his old happy self again. I was finally able to stop obsessing about cranio. We were on the other side and it was a great place to be! But it would not last long. About 6 weeks after Jesse’s surgery when I started feeling that something wasn’t right. I actually felt something wasn’t right the first time I saw him in the recovery room, but I pushed it aside as post-op jitters.
I took Jesse in for a follow-up visit with his surgeon on October 5th. When the doctor’s fellow came in, she said everything looked great. I asked about all the lumps and bumps and soft spots, and she assured me they were all normal and that it head would probably just get lumpier as time goes on. I asked about his forehead still being narrow, and she said it would widen over time. She believed that I wouldn’t need to come back for another 6 months. Then the surgeon came in. He took a look at Jesse and said that he wanted him to be put in a helmet. The surgeon said we needed to correct the flat spot in the back.
Jesse had a consultation with Cranial Tech on October 10th. He was diagnosed with moderate brachycephaly and right occipital flatness. And the orthotist saw what I saw, that he also continued to have bi-temporal narrowing from the metopic cranio. The orthotist said this is one of the hardest areas to fix with a helmet. Jesse received his band on October 27th, just over 2 months post-op. After about 3 weeks, when I took his band off to give him a bath, I noticed that his soft spots were bulging. I left a message for the CFS and his fellow called me back and told me to leave the helmet off and she would contact the CFS. Saturday morning she called back and said that the CFS said to leave the helmet off and to call Cranial Tech on Monday for an adjustment.
Since Jesse was acting normally, they felt it was being caused by the helmet being too tight. But she also told me to call his neurosurgeon to make an appointment. The appointment with Jesse’s neurosurgeon did not go well. Everytime I mentioned the bulging soft spots, he would just say the having the soft spots was normal and it would take time for them to fill in. He was not listening at all to what I was telling him. Then an hour after I left the appointment, his nurse practitioner called and said that I was to keep Jesse out of the helmet. They felt it was too restrictive for him. It took more than 4 days for the bulging to subside. I knew the band was our only hope for Jesse. I knew that without it he would need another surgery. I was devastated.
Over the course of the next few months, I would send photos to the CFS, have an appointment or two and be insulted, patronized and blown off. I finally sent photos of Jesse to some other craniofacial surgeons who felt that Jesse would need another surgery.