My daughter Brynnli was born two months premature by emergency cesarean section because I developed severe sudden onset pre-eclampsia. I went to the hospital with pain in my leg in which they thought I had a blood clot and while there my blood pressure sky rocketed. They tried everything they could to bring it down to keep her inside a bit longer but it became too dangerous for both of us.
Brynnli was born 7/20/17 and spent almost a month in the NICU to rest and grow. She developed a long, narrow head shape which was said to be from being in the NICU as they only keep them on their sides. We were told this would round out from laying on her back. A few weeks had gone by her father and I started to notice her head shape was getting worse and actually starting to bulge up and out the front. We were told over and over again it was nothing to worry about. We started to notice her eyes becoming uneven and distorted and her head was getting worse. We were still pushed aside.
Finally, at her six month check up with the pediatrician, after months of asking for help for her, they noticed that her soft spot was gone. We finally got a referral to see a specialist. We took our little princess to CHOP and was immediately diagnosed with both Sagittal and Coronal Craniosynostosis and would need surgery as soon as possible. The entire staff at CHOP was amazing and Brynnli was scheduled for surgery within less than a month as they said it couldn’t wait.
Brynnli had her first surgery at 7 months old in which they did a CVR (cranial vault reconstruction) with a FOA (front orbital advancement) using two distractors to complete the adjustments to her skull. At nine months she had her second surgery to remove the distractors.
It is an extremely scary and difficult process and these little ones and their parents really go through a lot. Though I wish Brynnli didn’t have to go through all of this, I wouldn’t change a second of it if it meant not having her. She is the light of our lives and perfect in every way! Brynnli will be two in a couple weeks and she is a very happy little girl. I have attached a few photos of before, during and after her surgeries. Please let me know if you would like anything else about her journey. I have also started a Facebook page for my own reference regarding her journey.