Thank you for taking the time to be apart of this site to keep our family and friends near and far updated on Sonny’s first surgery. While we know this time in the world is not ideal to be going through a surgery, this is essential to the safety of Sonny's brain development. We are seeing the many blessings as to why this timing is perfect and trust it with all our hearts. While we have not been totally public about Sonny's journey, we would like to use this site to share more details.
Jackson Asher Daniel, "Sonny" was born three weeks early on one of Charlotte’s rare snowy days on December 10th, 2017. I had a healthy pregnancy with no red flags and a swift textbook labor. Just as it was with Maddie, proud Daddy screamed "Its a BOY" and the midwife laid the baby on my chest. I remember lifting my head to hold him in search for ten fingers and toes and to my surprise, something was not right. While all his fingers and toes we there, they had not looked like they had finished developing fully. Both his fingers and toes were webbed together, sending a red flag to the birthing team. He was immediately whisked away to NICU where we would find out 24 hours later Sonny was diagnosed with a rare genetic called Apert Syndrome. About 1 in 60-80,000 babies are born with Apert Syndrome.
Apert Syndrome results in a gene change or mutation of the FGFR2 (fibroblast growth factor receptor 2) gene. This is not a gene that was passed from either parent, it is a change that occurred within Sonny. Maddie does not have the gene and Sonny will have a 50% chance of passing the gene on. Like any syndrome there is the spectrum of severity, development and characteristics. We were told at birth that we would have to watch his development to see where the delays occur. As Sonny has grown and developed, we can now see he is on the lesser end of severe spectrum but he possess some of the more major characteristics of the syndrome. These include skull bone fusions (craniosynostosis) and webbed fingers and toes (syndactyly). The coronal sutures of his skull fused prematurely in utero. The skull fusions pull his midface back and in narrowing his upper airway so the upper palette of his mouth is very narrow causing teeth delay and to many teeth to come in. The upper airway also causes sleep apnea and breathing congestion. One of my favorite characteristics of the syndrome is "unruly hair" and this no doubt is true of Sonny. Maddie always says "look at his wild hair" trying to tame it with her littlest baby doll brush.
Thankfully, corrective surgery is possible which brings us here to his first surgery on his skull and face called Monobloc Frontofacial Advancement with distraction. The purpose of this surgery is to move the bones of the forehead and midface forward. In addition, the surgeon opens the closed joints (sutures) at the front of the skull. The surgery gives more space for Sonny's growing brain and it helps ease breathing, eye protection, chewing and appearance. Hand surgeries will happen in the future and this will be another post when the time comes. We are under the stellar direction of Dr. David Matthews, craniofacial/plastic surgeon and Dr. Mark Van Poppel, neurosurgeon here in Charlotte, NC at Levine Children's Hospital.
Whether you have had the chance to meet Sonny in person or not, you can tell by the photos he exudes JOY, is happy all the time, walking, talking, trying to ride his tricycle, run hugging, ripping apart books and blinds daily, LOVES to open and close CD's and cabinets, plays guitar and harmonica with Josh, takes every spice out of the cabinet hourly. loves trying to imitate big kids, loves animals, spins around in circles to dance, repeating new words everyday, eating like a madman, and I repeat eating like a madman, tells us he has a poop and likes to sit on the training potty, learns to use his mitten hands in all ways to get what he wants and is even starting to hit his big sister. This 1 out 60-80,000 chance has made us realize we absolutely WON the parent lottery with Sonny!! We will all learn a deeper compassion from this human. His will and spirit are strong and vibrant and willing to be here in this world at an imperative time.
We feel your love and support from all over, PLEASE keep up the encouragement and love below with notes and we will continue to post pictures and updates here as our main communication as the surgery finishes and recovery begins. With the virus, our physical support we have always imagined during this time has changed drastically, but still seeing it show up in creative ways and holding gratitude for all the love, prayers, candles, thoughts, calls and texts coming our way!! Please include prayers for these doctors, their teams and all the nurses and hospital staff that will be caring for us this week. We love you all!!