Layne's journey updated
Layne was born with Saggital 10/21/08. Diagnoses was confirmed the day before we left the hospital. That started our crazy cranio journey. We began seeing Dr. Clay(PS), Dr. Wetjen(NS) at the Mayo Clinic and I did a little research online. I felt confident with the Mayo Clinic after all it was Mayo Clinic. Well time passe and it became time for Layne's first surgery. 02/20/09 my lil baby had the "PI" procedure which we thought was the best choice. We were wrong but never knew until months later. After swelling had gone down I began to notice something wasn't right with his head shape or his forehead. After going back to Mayo many times and emailing Dr. Fearon in TX. I began to realize that his head was reverting and he had the wrong procedure done for his craniosynostosis. Layne had begun to develop a Metopic ridge almost right away after surgery. Dr's here at Mayo said it was a "side effect" from 1st surgery where they pulled his forehead back. Dr. Fearon in TX told me that he looked like he was becoming Metopic and he probably had the wrong type of surgery for his cranio. So that began my year long battle with Dr's here at the Mayo Clinic to get something done about it. I went back MANY times to the PS and even to the NS to try and get them to admit something was wrong and not once did they. They kept telling me give it time...if it is till bad by age 4-5 they could fix it. Well that spurred me to make an appointment and travel to Texas from Minnesota. June 2010 we met with Dr. Fearon in person after many many emails he confirmed what he thought all along. Layne needed a 2nd surgery and he was now Metopic too. So armed with my letter I came back to MN and saw the other PS, Dr. Bite, at Mayo. He agrees with Dr. Fearon, but wanted to wait until he was at least 2. So after waiting many long months we went back for a follow up and decided it was time. And then began the count down to surgery #2. On Feb 16th, 2011 Layne had a TOTAL CVR. He was gone from us for 13 hours and surgery was 10 hours. It was a long exhausting day for everyone. He went into the PICU at 945pm, mind you we arrived at the hospital at 630am. They took him back to prep for surgery at 801am. So now we are watching and waiting to see how this new head turns out.....and it is very hard waiting and watching. I can see some areas that aren't right but maybe with time.....
Thank you for reading our story.
Jenni Newell and Layne Harris
(I tried to keep it short, but feel free to ask any questions and I can give you more details)
