Brynly was Born on Nov 28 2017! During my pregnancy we went for weekly ultra sounds and stress test, because she had high fluid around her. But everything always checked out weekly, they just wanted to continue to monitor her! Her due date was Dec 11, but we knew that I would probably be induced and take her a little early. I went in to the doctor on Nov 27 for a routine appt and I asked the dr "are we going to discuss possible induction, I know you had mentioned it before" he looks at me and kinda pauses for a minute and then says "yea, we will but first I need to take your blood pressure again, it was really high when the nurse got your vitals", he gets out the blood pressure cuff and puts it around my arm. The whole time he was not really saying anything, so I said again "So are we going to schedule it for about a week or a couple days before her due date". He looks over and says "we are going to go ahead and schedule it now"! I say "ok for when!?" He looks at me again, this time more serious "we are going to go ahead and start the process now, your blood pressure is really high, I'm calling for transportation to have you taken to the hospital"! I literally could not think, Brynlys dad Josh was at every apt, except for this one! I immediately called him and told him! I got to the hospital and got started on the induction meds right away. The next morning Brynly made her arrival! At first everything seemed great, I had my little bundle of joy, she slept, ate, pooped and did it all over again! After a few days, I started to notice that Brynlys head was oddly shaped and her eye looked a little deformed!! We were going to her pediatrician for weekly weight checks, so everytime we went I brought up her head! They kept assuring me nothing was wrong and babies have "funny shaped heads". I started doing my own research and I found craniosynostosis. The signs and symptoms fit Brynly to a T, (I was sure this was what she had). I brought it up to the doctor and they told me to stop googling and wrote "STOP GOOGLING" on my discharge papers. Finally they referred me to neurology to make sure she was on track developmentally and once again I brought up her head, once again I was told that "she doesn't have craniosynostosis, her soft spot is still open". No-one could give me answers. Neurology referred me to Physical Therapy because they thought she had torticollis in her neck (which we found out later she did)! We went to physical therapy and almost immediately the therapists says, "not to be rude but do you think something is wrong with her head and eye", I jumped out of my seat "YES, Do you see it!" I proceeded to tell her everything! She asks if I have been to radiology and I tell her "no they won't send me." She got on her computer and immediately emailed the pediatrician! She told them we needed a referral to radiology. I awaited the results anxiously, checking my chart multiple times a day. The results were in: LEFT CORONAL CRANIOSYNOSTOSIS! We were sent to nuerosurgery, and set up for Cranial Vault Remodeling (they cut the skull open from ear to ear and go in and cut open the bones that are fused) & Frontal Orbital Advancement (fixing the eyebrow bone and orbit around the eye). Before surgery she had to have another CT scan, the results were not something we expected: left coronal craniosynostosis, and now right coronal cranio and both lamdoids were partially fused as well. The surgery didn't change.. but the work they had to do did! 10 hrs on the operating table! When we walked into recovery, the sight was unbearable! She was on a breathing machine, her eyes were popped open from all the swelling but she wasn't awake, it was horrific! She sailed through it though and her resilience was astounding!! Brynly was diagnosed with Crouzon Syndrome, it is a genetic disorder that causes cranio but a list of other things as well. So far we have yet to see any of the other things but they can happen as she grows. We are not sure if more surgeries are in Brynlys future, but we are optimistic that this little girl can push through anything that comes her way! Brynly can light up a room when she walks in, everyone knows her and her little smile! She is so sweet and loving but at the same time can be mean as a rattle snake, she pulls my hair but when she is pulling it, she kisses my head at the same time🤣! I love this little girl beyond words and I'm confident through sharing her story, you will fall in love with her too!!
