If you have been following Mason's journey on social media, you may remember that he was diagnosed with Metopic Craniosynostosis (skull fusing too early) at 5 months of age by a Neurosurgeon and wore a cranial band for several weeks to help his skull reshape. He had amazing results from the band, and a recent eye exam showed that as far as we can see, his brain is not under any intracranial pressure from his skull fusing too early. We are praising Jesus for this amazing news!
As of right now, Mason George will be undergoing a major skull surgery in the beginning of October to open up the part of his skull that fused too early so that his brain has enough room to continue to grow and develop. The surgery is very intense and will require a 4-6 day PICU stay afterward. We have the most amazing team of doctors at Rady's Children's Hospital. The results that this surgery will offer Mason are life-changing! I will go ahead and answer some of the most common questions people ask when they hear the news that our son needs skull surgery... hope this helps!
OK, so what does he have again?? How did he get it?
Mason has craniosynostosis (kray-nee-o-sin-os-TOE-sis), meaning that part of his skull fused too early. For him, the metopic bone (the one right in the middle of his forehead) is the one that closed to early. As his head grew, this caused his temples to be pinched, a ridge developed on his forehead, his eyes became quite close together, and his eye brow shelf is almost flat. Looking down on the top of his head, his head looks like an egg and is very narrow at the forehead. 3 in 10,000 kids have some form of craniosynostosis! So how do kids develop this rare and unique variation? Craniosynostosis can be related to a syndrome, it can be genetic, it can be influenced by the position of the baby in the womb, and it can be related to how the brain grows. In Mason's case, it is likely that his skull fused too early because of the shape of my pelvic bowl, but we will never know for sure!
He looks fine, why does he need surgery?
He is pretty adorable, I have to say! Unfortunately, craniosynostosis is a progressive condition. Most experts recommend surgery between 6-12 months to ensure the best possible outcome while the skull is still malleable. There are three main reasons why surgical intervention is needed: medical necessity, preventing future problems, and for cosmetic reasons. We are so thankful that he does not fall into the medical necessity category. Those babies are suffering from intracranial pressure (ICP), headaches, non-stop screaming, and significant developmental delays. Often they need emergency surgery. Mason will be having skull surgery to prevent future problems and for cosmetic reasons. The problems he could face if he does not have surgery include: development of ICP, restriction of brain growth, developmental problems, challenges with speech, behavior-related disorders, eye problems, breathing problems, and several other similar challenges. As his little baby head becomes a toddler head, a kid head, a teenager head, and finally an adult head, it will become progressively shaped very different from his peers and look kind of like a mouse (eyes, nose, and mouth close together). I originally though it would be ridiculous to put him through surgery for cosmetic reasons. In the case of pediatric plastic surgery, cosmetic means "to restore". Our team repairs cleft lips, facial injuries, and several other conditions involving the skull. They give kids a better life and bring restoration to their faces so they can go out and be world-changers. We want Mason to have the best chance to grow into all that God has intended for him.
So what do they do during the surgery?
*Not for the faint of heart. Skip over this if that is you*
Mason will be under general anesthesia. He will be undergoing two procedures during his surgery. He will have a Cranial Vault Remodeling with a Fronto Orbital Advancement, in short CVR/FOA. Basically, the team will be reshaping his skull and moving the front of his eye bones forward. The surgeons will make an incision from one ear to the other along the top of his scalp. The scalp will be partially removed and the Neurosurgeon will remove the front of his skull from his brain, the part that is fused, along with part of his eye socket. The plastic surgeon will reshape all of these bones, and then they will be placed back on his brain with re-absorbable devices to keep it from fusing again. His scalp will be sewn back up and he will be moved to the PICU for recovery. One huge bonus? He will have an awesome scar with an awesome story!
What is the recovery like?
I have heard from other moms that it is very, very hard. For a few days Mason will have a drain in his skull, his eyes will swell shut, he will likely have a hard time eating, and he will be uncomfortable. I can stay with him 24/7 if we want to, which is amazing! My mom will thankfully be coming down to help out during the week of surgery and recovery, and I am hoping to have more family come to San Diego after he is released from the hospital to help out with Caleb. Everyone keeps telling me that babies bounce back really quickly and they are superstars compared to us adults. Two weeks after surgery moms will often say other than a scar and a whole new face, you would never know their kiddo was a cranio surgery warrior.
Wow. That's a lot of heavy and scary stuff. How are you feeling about it all?
I am at peace finally. We will continue to pray daily for healing and restoration for Mason's skull, and for God to reshape his facial bones. My heart's cry has been "God, whatever brings YOU the most glory, lead us down that path". I am fully trusting that Jesus will be glorified through this journey with Mason. I have connected with so many moms through social media who have gone through this surgery with their babies, and it very reassuring to see life on the other side of this mountain. I fully trust our Doctors and the level of skill and experience they have with performing this surgery. I still get scared and upset that my baby has to go through this, and then I am reminded God created Mason to be extraordinary. Why would I want him to be "normal" when he was born to stand out?
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| Mason and his Neurosurgeon Dr. Meltzer |
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| Normal skull shape in the middle, and variations of early skulls fusion. Mason's is at the 11:00 position |
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| Typical infant skull CT scan |
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| Mason's CT scan. Notice the front of the skulls has fused and the eyes are closer together |
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| Rough visual of the surgical procedure. Not exactly now it will be done, but its close. |
