♡ Leyla's Open Skull Surgery ♡

On November 29, 2017 it felt as though our world's came crashing down. We received some awful news that our 4 month old baby girl would be needing open skull surgery also known as open cranial vault remodeling. Leyla was a perfectly healthy baby so this came to much surprise to us ..... Her journey began when we went to her 4 month old check up. Her pediatrician measured her head at least 4 times and we knew something just wasn't right... apparently her head was growing but not as fast as it should of been growing so her pediatrician scheduled a ct scan just to make sure everything was okay. Unfortunately everything wasn't okay. It turns out Leyla has a rare condition called Craniosynostosis. Craniosynostosis is when one or more of the fibrous sutures in an infant's skull prematurely fuse by turning into bone causing restricted skull and brain growth. There are 4 different kinds. Leyla has Sagittal Synostosis also known as Scaphocephaly. This condition is found in 1 out of 2000 births. The ct scan revealed that her sagittal suture was completely fused (closed). Sutures are the junctions in which the bones meet in the skull. It's extremely important that infants sutures remain open so the skull can grow as their brain continues to grow! If one of them is closed early it causes abnormal skull shape and can cause pressure build up inside the skull which can cause a delay in mental development or for Leyla to one day go blind if left untreated. We were immediately referred to a maxillofacial doctor here in El Paso to be given an explanation of the treatment Leyla would be needing which was absolutely devasting to hear . On top of the fact that my beautiful baby girl would be needing this major surgery we also came to find out El Paso lacks a pediatric neurosurgeon which is absolutely necessary to ensure this surgery is done properly. The procedure that will be done is called open cranial vault remodeling also know as CVR. During this procedure a craniofacial surgeon and a pediatric neurosurgeon will be working together. They will cut her skull completely open by making an incision from one ear to the other. They will then remove the areas of the skull that were effected by the fused suture and rebuild the skull into a normal shape. In order to rebuild the skull they will be holding the bones together so they can heal by using dissolving stitches. As this procedure is extremely major we did a great deal of research to ensure our daughter would be in great hands. We finally found an amazing craniofacial doctor in Dallas who will be doing her surgery at the Craniofacial Center located at Medical City Children's hospital. With that being said we are seeking helping hands who can assist us with ensuring Leyla's rare condition gets treated and all expenses which are associated with it, which include medical expenses for treatment, traveling and lodging expenses needed to get us back and forth along with our everyday expenses as me and her father will be out on an extended leave of unpaid absence to care for our daughter. We will be driving back and forth from El Paso to Dallas at least once a month up until the day of surgey.  As for the actual procedure Leyla is expected to be in the hospital for at least a week with a follow up visit about a week later therefore we will be staying in Dallas for about 2 weeks given everything goes as expected. Leyla will not be able to return back to daycare for about a month following her procedure. Therefore we are asking for assistance from anyone who would be willing to help. We completely understand if you are unable to however we do ask that everyone please say a prayer for our beautiful baby girl as she has a long road ahead of here. We thank each and everyone of you who took the time to read this and we will continue to keep everyone updated!!! ♡♡♡ We Love you guys ♡♡♡