Raising Awareness for Apert Syndrome
šDawson is out of surgery!! š
Thereās isnāt one thing that can prepare you for how much your baby changes with an FOA. Weāre just so thankful he came out just fine and now doesnāt have pressure dangerously building on his little brain. Thank you all for your prayers!ā¤ļø side note to clarify... there is a ton of swelling.
I have had a very hard time putting this post into words.... this week has been a roller coaster for me/us. A few have asked for reminder on dates and times. (We really arenāt super popular, just have some amazing friends who care!š) anyhow, hereās a summery!
This is the last night Dawson goes to sleep with an uncut head. Itās hitting harder than I imagined. I couldnāt help but take a few pics of his precious sleeping face!š
We have been here in Dallas since Wednesday morning and will be here until at least Sunday.
Wednesday Dawson had covid testing and pre-op paperwork.
Today we had a sedated MRI, bloodwork, many phone call confirmations, Cranio team consults including anesthesia, Dr. Fearon and finally meeting Neurosurgeon - Dr. Succo for the first time and then yes, more paperwork.. I canāt even begin to explain how many papers I have had to read and sign the last few daysšš
CVR was explained fully to us today on what Dr. F process is and which stage will come first. Daws has both bilateral coronal craniosynostosis which is rare, making up about 5-10% of cases and affect the front of the skull. As well as, right lambdoid synostosis, which is the rarest form, but is generally syndromic, such as with Apert syndrome; and it affects the bottom part of the skull.
Tomorrow, Daws will be having whatās called a Fronto-orbital advancement (FOA). Itās a surgical procedure used to reshape and reposition the bones of the forehead and the eye sockets. The whole process will last around 6 hours (from arrival to PICU recovery) and will begin at 6:00am 7/31. This surgery is the most dangerous surgery Dawson has, but itās also the most important and weāre so grateful to have found this team, he is in the best surgeons hands!! Please keep Dawson in your prayers that he will come through better than even expected, and us parents as we face this day. Itās been hard. There has been a few breakdowns. But I know God has blessed us already with him, and Iām trusting He will do so much more! Iām so grateful for my family and how much they are helping us during this time trying to lighten our stress load! Also, so grateful to everyone who has been praying and messaging!
I canāt get over how amazing our little man is doing! We are so very blessed with his health lately!!
We do have an AWESOME update here!!! We got the go ahead for surgery next week!! It has been so scary thinking it was being canceled, and then the finalizing of dates and times finally were called in and emailed to us!
In this post, I will have a few quotes from Dr, Fearons online page to help me explain what will be happening this time. This is not Dawsons longest surgery, but we have been told it is his most dangerous one.
Daws will have his first cranio surgery which is called a CVR(Cranial Vault Remodelling). The goal of the first skull surgery is to enlarge the skull to give his brain more room to grow. Once a suture is fused shut, it cannot be āreleasedā in such a way as to permit better growth. This is because it is impossible to surgically recreate a functioning suture; therefore, it is important that the surgery is able to accomplish a significant enlargement.
(The skull is made up of separate bones and the spaces between these bones are called sutures.) In Apert syndrome all these skull sutures eventually fuse together, but usually the first sutures to fuse shut are called the coronal sutures. These two sutures run from ear to ear across the top of the head; the right and left coronal sutures meet at the top of the skull at the soft spot, or anterior fontanel. With these sutures fused shut, the skull is not able to grow in a normal way to accommodate the growing brain. (We will be told next week the day before surgery, exactly which fusions Daws has.)
The skull cannot get larger from front to back so instead, the brain grows upward making the head taller. In most children with Apert syndrome the soft spot will split open down the middle of the forehead like a seam tearing open in a tight pair of pants, leaving a large open area of the skull from front to back that feels soft. Eventually, over time this open area will completely close up with bone. One constant concern for children born with Apert syndrome is the possibility for raised intracranial pressure. We know that children with Apert syndrome have larger brains. Although the skull can get bigger without sutures, the abnormal closure of skull sutures (craniosynostosis) does somewhat limit the ability for the brain to enlarge freely in all directions, leading to slightly higher pressures inside the skull, which in turn may reduce blood flow to the brain. Raised intracranial pressure is most often treated by surgically enlarging the skull.
There will be a pediatric neurosurgeon and craniofacial surgeon along with a team, working together over the course of the entire procedure.
The second goal for Dr. Fearon and his team, is to significantly reduce the high number of operations that most children normally undergo, which plays a part in why we chose Dallas as our team! So because of that, He will not be getting distractors. But instead will have his skull rebuilt and it will be held together with dissolving sutures. In order to perform this surgery, Daws will have a wavy zigzag incision from ear to ear to allow plenty of room for skull removal and correction. At the end of the operation, Dawsons scalp will be closed with dissolving stitches. We will stay in PICU for a minimum of 24 hours then move to a floor for 48 hours for monitoring. If Daws does as well as expected, we will be home on the 3rd day after surgery! We will update as we can, but this surgery does have us a bit nervous, so might not be able to as much as usual! Thank you for your thoughts and prayers! #happybaby #craniobaby #craniosynostosis #apertsyndrome #choosekind #ccakid #kindnessmatters #boylife #craniofacialawareness #cvr #drfearon #dallas #apertsyndromewarrior #craniofacial #Surgery #ccakids #spreadlove #inclusionmatters #overcomer #apertowl
